Noteworthy News Articles on Mental Health Topics, March 15-18,
2001
Study Finds a Pill That Can Treat Costly Gambling Addiction
Melanie Axelrod, ABC News- 3/15/2001
A pill commonly used to treat alcoholism and drug addiction may be able to help people
overcome compulsive gambling, a new University of Minnesota study has found. Researchers
showed that the drug naltrexone, which the Food and Drug Administration approved for
alcoholism in 1995 and for drug addiction in 1985, was able to reduce gambling urges in
almost 75 percent of the 20 people in the study. Those people who received a placebo only
cut their gambling urges by 24 percent. "My original hypothesis was that I should
never delude myself to think that I have solved the gambling problem," said Dr. Suck
Wong Kim, director of the impulse control disorder clinic at the University of Minnesota.
"What I am trying to say is that we now have promising drug agent that may be
working."
Drug Helps Curb Urges
Kim believes the drug can help people who gamble because it suppresses the "rush or a
high" they usually got from playing and winning. Naltrexone, commercially distributed
by E.I. du Pont de Nemours and Co.of Wilmington, Del., as Revia, regulates neural activity
in a part of the brain where human cravings are processed.
Study participant Leo Neudecker, 56, of Plymouth, Minn., said the drug
has significantly cut his urge to gamble. "I was gambling regularly in casinos
throughout the state, and I just realized that if I kept doing what I was doing,
eventually, I would be dipping into my business and my nest egg," he said. "I
went to GA [Gambler's Anonymous] a couple of times and that really didn't help."
Neudecker said gambling never caused any serious financial ruin for his family, but he was
concerned enough to get help. Taking the drug, he says, reduced his desire to gamble. And
although he admits to participating in the office NCAA basketball poll ("it's only
$5"), he was able to go to a casino recently with his friends to "hang
out." He didn't feel the need to place a single bet. "It's amazing, I can't
explain it," he said. "It's not that I don't think about [gambling], but I have
no real desire to go anymore."
But problems will face gamblers who may want to take this drug, which
currently is in clinical trials. It is expensive, costing $3 a pill, and insurance
companies do not cover this experimental indication. Also, the dosage is higher than that
recommended for alcoholism and may be lead to liver problems and bad interactions with
over-the-counter pain relievers.
Thousands of Americans Suffer
Less than 5 percent of Americans develop serious gambling problems, according to the
National Council on Problem Gambling in Washington, D.C. But the cost of treating this
addiction nationwide is billions of dollars. The habit is not easily treated, and many
sufferers will lose their savings, homes and sometimes will commit suicide. Programs such
as Gamblers' Anonymous have shown success rates as low as 8 percent. A drug such as
naltrexone, therefore, could make a substantial impact on the treatment of this condition.
But despite the serious financial and personal losses that compulsive gamblers face,
federal grants for projects weigh in at a mere fraction of the losses only about $6
million in federal money went to research last year, according to Kevin O'Neill, deputy
director of the Council on Compulsive Gambling of New Jersey. "I guess one of the
reasons why GA has such low success rates is because these gamblers are very impulsive
people," said Keith Whyte, executive director for the National Council on Problem
Gambling in Washington, D.C. "It's hard even just to get many of them to a
meeting."
Patients' Mental-Health Suit Advances
Kirk Mitchell, Denver Post- 3/15/2001
The U.S. 10th Circuit Court of Appeals refused to dismiss a class-action lawsuit by
mentally ill patients against the Colorado Mental Health Institute in Pueblo, ruling that
their constitutional rights may have been violated. The decision, made last week, was a
major step, said Kathleen Mullin, a Denver attorney representing the patients. Their suit
seeks unspecified damages and an injunction to improve institute conditions. "Now we
can go forward with depositions, and we'll have a chance to get documents (that hospital
officials) withheld," Mullin said.
The lawsuit alleges that institute officials, including superintendent
Robert Hawkins and director Garry Toerber, knowingly provide substandard medical and
psychiatric care to patients. Patients also complained of unsafe conditions and said the
institute retaliated against them when they filed grievances. State officials had appealed
a Denver District Court decision rejecting their claim of immunity from liability as
government officials. But Circuit Judge Henry Politz upheld the ruling, saying that if
claims made by the patients were true, constitutional rights had been violated.
"In addition to stating that defendants provided insufficient care
or poor treatment, the allegations note problems with the care, such as punishment for
lodging complaints, inability to visit with family or friends, and invasive searches by
staff of the opposite sex," Politz's ruling said. He also concluded that a reasonable
official should know when a patient's constitutional rights had been violated. "We've
gone through the gantlet, and the courts have rejected their argument," Mullin said.
Ken Lane, spokesman for Attorney General Ken Salazar, would say only
that the state is considering whether to appeal the case to the U.S. Supreme Court.
"If the hospital wants to appeal, we'll appeal," Lane said. Liz McDonough,
spokesperson for the Colorado Department of Human Services, which oversees the institute,
said the lawsuit is still in the early stages. "We intend to vigorously defend
ourselves," McDonough said.
Study: Women Alcoholics Suffer More Than Men Alcoholics
Lisa M. Collins, Associated Press- 3/15/2001
DETROIT--Women alcoholics suffer greater problems physically, mentally and socially
than men alcoholics do, according to a study released this week. The study of more than
400 people from St. Louis found that women alcoholics report more body pain and poorer
physical and mental health than men alcoholics do, said Kyle L. Grazier, a professor at
the Michigan School of Public Health who co-authored the study with Kathleen Bucholz of
Washington University.
''The women alcoholics were much more likely to report having
depression, and having depression that interfered with their daily lives,'' Grazier said
Thursday. Physically, women alcoholics were much more likely than men to have problems
walking up stairs, walking more than a mile, bending over and doing other daily
activities, Grazier said. Also, women were more likely to report that the alcoholism
interfered with their daily lives. There were similarities between the men and women
alcoholics in some regards, Grazier said. Both sexes of alcoholics were just as likely to
stay in bed all day because of the addiction. They also were found to be just as likely to
seek and receive treatment, she said. The study is ''observational,'' so it isn't
meant to come up with reasons for why the findings are the way they are, Grazier said.
The three-year, $2 million study was funded by the National Institute
of Alcohol Abuse and Alcoholism. It surveyed 444 people over 18 months. The study group
was derived from a larger study conducted by the National Institutes of Health that
diagnosed people as alcoholic, borderline alcoholic or not affected by alcohol. The
research will be presented March 27-31 at the First World Congress on Women and Mental
Health in Berlin.
Though Grazier and Bucholz found that women alcoholics suffer more
problems than men, there are far more alcoholic men than there are alcoholic women, said
Dr. Barbara Dickie, associate professor at Harvard Medical School. Men are ''far more
likely'' to have a substance abuse disorder such as alcoholism, Dickie said. Dickie, a
mental illness researcher, said that not unlike Grazier and Bucholz' analysis, her studies
have shown that men and women who are mentally ill and have substance abuse problems have
similar admission rates to treatment centers. She surmised that differences between men's
bodies and women's bodies relates to why they react differently to alcoholism. ''When you
talk about having too much to drink, it has to do with body weight and metabolism. Women
metabolize alcohol differently,'' Dickie said.
Dr. Roger Weiss, clinical director of the alcohol and drug abuse
treatment program at McLean Hospital in Belmont, Mass., and associate professor of
psychiatry at Harvard Medical School, said there have been other studies that show women
suffer more medical problems than men from alcohol abuse even when figured for body size.
''Men break down more alcohol in the stomach than women do, so you get less pure alcohol
getting into the blood stream to cause complications,'' Weiss said. ''It's a difference in
enzymes.''
Bill Would Give Voice to Molestation Victims
Rick Klein, Boston Globe- 3/16/2001
Responding to pleas from victims of a former Catholic priest convicted of sexual
molestation, the Legislature's Public Safety Committee rushed out a bill yesterday that
would allow those victims and others like them to testify at parole hearings. Former
priest James R. Porter, who has served seven years of an 18- to 20-year sentence for
sexually abusing 28 children, is eligible for parole April 30. Several of his victims told
lawmakers that they want to tell the state Parole Board about the psychological impact of
the abuse. The committee agreed, and in an unusual step, members went into executive
session in the middle of a public hearing and reported the bill out favorably. ''This is
about the Parole Board getting balanced testimony,'' said the bill's sponsor, Senator
Cheryl A. Jacques, a Needham Democrat. ''They need to hear both sides of the story.''
The measure will now move to the Senate and then the House, and
advocates hope to pass the bill in time for Porter's parole hearing. Governor Paul
Cellucci is expected to sign the bill. The measure would allow victims of violence and sex
crimes to have input at parole hearings, either in person or by closed-circuit television.
A similar bill passed the Senate last year but was never taken up in the House. State law
now allows testimony at parole hearings only from family members of first-degree murder
victims and victims in cases where the convicted person is serving a life term.
Representative Cory Atkins, the House sponsor of the measure, said the
bill is about helping the victims, many of whom could find comfort in appearing before the
Parole Board. ''So much of our legal system focuses on the defendants,'' said Atkins, a
Concord Democrat. ''It's going to make a difference for a lot of people.''
Porter, a longtime priest in the Diocese of Fall River, pleaded guilty
to 41 charges of sexual abuse in 1993. He was denied parole at his first hearing last
year, but he will be eligible next month and every year until his sentence is complete.
His victims praised the legislators' fast action yesterday. ''I'm glad they understood the
urgency of this getting through,'' said Frank Fitzpatrick, a Porter victim and founder of
Survivor Connections, a nonprofit group that provides information to sexual abuse victims.
Vermont House Votes to Outlaw Gay Marriage
Pamela Ferdinand, Washington Post- 3/17/2001
BOSTON-- Vermont's House of Representatives passed a bill today outlawing same-sex
marriages, a backlash against the first-in-the nation civil unions for gay couples that
legislators approved less than a year ago. In a largely symbolic gesture certain to reopen
old wounds, Republicans, who gained a majority for the first time in 16 years amid
anti-civil union sentiment last fall, pushed through the measure outlawing marriages
between people of the same sex. The measure was approved on a voice vote that followed an
84 to 15 preliminary vote in its favor Thursday.
Although the legislation is not expected to pass the
Democratic-controlled Senate, the House vote represents the first significant rebuke to
civil unions in a state that has been marked by "Take Back Vermont" protest
signs and anti-gay vandalism since the decision to allow civil unions. The bill mirrors
efforts elsewhere in the country to block recognition and legalization of same-sex unions.
Thirty-five states have enacted Defense of Marriage Act laws restricting marriage to
heterosexual couples, and Nevada and Nebraska have banned recognition of civil unions.
More bills are pending, in states that include Maryland, in part because of concern about
the 1,422 nonresidents who have filed civil union certificates. That is more than three
times the number of Vermont residents who have chosen to participate in civil unions.
"The question is, will they go back to their respective states and
challenge the marriage laws?" said Heather Cirmo, a spokeswoman for the
Washington-based Family Research Council, which opposes same-sex unions. "We're
definitely gearing up for that battle. And hopefully, Defense of Marriage Laws will
nullify civil unions."
Others contend that the vote against gay marriage does not pose a
threat to the future of civil unions. They note that the Netherlands is expected next
month to become the first nation to allow full, legal marriage for same-sex couples.
Legislators in Hawaii, Rhode Island, California and Washington state have introduced bills
to allow civil unions. And today, Connecticut legislators held a packed hearing to discuss
legal protections for same-sex couples.
"These people [in Vermont] who are voting for this spiteful
measure are really just railing against the tide," said Evan Wolfson, director of the
Marriage Project for the Lambda Legal Defense and Education Fund in New York, the nation's
leading gay legal rights organization. "We are seeking full equality under the law
because nothing else will fully protect our families, and this measure will do nothing to
stop that."
Vermont law prohibits a man from marrying any of his close relatives.
The proposal passed by the House would add the phrase "or another man" to the
list of forbidden spouses. The same change would apply to women. Advocates contended the
bill is necessary to clarify the definition of marriage. It also marks the beginning of
the dual processes of trying to repeal civil unions and preempting gay couples pursuing
full, legal marriage, they said. "I believe that the door needs to be shut on whether
a man can marry a man, and a woman can marry a woman. This law does that," said state
Rep. Craig Scribner (R), whose opposition to civil unions led to his victory against a
veteran incumbent last fall. Fellow Republican state Rep. Nancy Sheltra, an outspoken
opponent of civil unions, agreed, calling it "a step in the right direction."
She has sponsored a Marriage Restoration Act, one of three pending House bills to repeal
civil unions. "For me, there is a bigger issue here, and that's the promotion of the
homosexual agenda, both in Vermont and the nation," she said.
Opponents, however, called the action a mean-spirited ploy and an
unnecessary measure that renewed tensions. Civil union legislation, which took effect in
July after the state Supreme Court found that gay couples were being unconstitutionally
denied marriage benefits, prominently defined marriage as the union of one man and one
woman. "We're still healing from all that was said about the gay and lesbian
community from people who opposed civil unions, and a lot of it was very, very
hurtful," said state Rep. Robert Dostis (D), who is gay. "There is no confusion
on what marriage is, and what it is not. So why the need to clarify this further?"
State Rep. William Lippert Jr. (D), a member of the House Judiciary Committee who is gay,
added: "This was a political bill only. It has no chance of passage. This is payback
[for] the right wing and anti-civil union forces of Vermont."
Advances in Treatment Give Hope to Parents of Children with
Autism
Rosie Mestel, Los Angeles Times- 3/12/2001
Getting the diagnosis of autism for a child is just one step down a long, rough road--a
step that too often comes late. It takes time for parents to realize something's wrong
with their child. It takes more time still for professionals to agree there's a problem
and figure out what it is. A pediatrician might suspect a hearing disorder: You can clang
two pots and Johnny won't even turn his head. A speech therapist might think it's a
language problem: Jenny isn't talking at age 3 except to echo the words of other people. A
psychiatrist might decide Jimmy is emotionally disturbed: He has screaming fits and won't
do what he's told. And getting a diagnosis is only the beginning. Next comes perhaps the
hardest struggle of all--figuring out the best way to help your child and battling to get
services. All the time the clock is ticking. All those minutes and months of
childhood gone. There is no known cure for autism, but the best prognosis for an autistic
child is when intensive interventions start as early in life as possible.
Delays, though agonizing, aren't surprising. Doctors haven't
traditionally had their antennae tuned to autism, a devastating brain disorder in which
children are mysteriously cut off from interacting with others around them. There's no
blood test to render a simple "yes" or "no" diagnosis: Experts must
rely on involved assessments that probe an array of behavioral traits. And knowledge about
autism is primitive, compared with knowledge about diabetes or heart disease: "It's
like where they must have been at the turn of the [last] century with diabetes, when they
knew that the urine was sweet," says Dr. Ricki Robinson, a La Canada-Flintridge
pediatrician and a clinical professor of pediatrics at USC School of Medicine.
But change is coming. The sharp increase in children diagnosed with
autism means that the disorder is on doctors' minds like never before--so autistic
children are less likely to be overlooked or misdiagnosed. And that means--contrasted with
former years--that the fate of many autistic children is far less likely to be an
institution, group home or lifelong dependence on parents. Many children can be at least
partially coaxed back out from their remote, inner worlds and learn to talk with others,
go to regular schools, hold down jobs, have friends.
"For so long, people had a misunderstanding of what autism
is--they thought that interventions were a waste of time," says Betty- Jo Freeman,
professor of medical psychology at the UCLA School of Medicine. "It's not true at
all. The natural course of autism, for children who get intervention, is one of
improvement. Clearly, from a clinical point of view, we're seeing kids doing so much
better it's unbelievable." Even so, desperation has created a climate in which shaky
reports of miracle cures are easier to find than solid scientific studies. Every year it's
something different," says Ami Klin, a psychologist with the Yale Child Study Center
in New Haven, Conn. "Parents need to be tremendously skeptical."
And diagnoses often come with scant direction, so parents can spend
months or years researching how to find help themselves.
"You're told: 'Your child has a severe disability, there's no cure, about no research
going on, we don't know how to treat him--goodbye!' It's incredible in this day and
age," says L.A. resident Portia Iversen, mother of an autistic child. Frustration led
Iversen and her husband, Jon Shestack, to start Cure Autism Now, an L.A.-based nonprofit
group that funds autism research and which has campaigned fiercely for ramped-up
government funding. And though federal law requires school districts to provide "free
appropriate public education" for children with disabilities such as autism, there
can be anything but agreement about just what "appropriate" means. It is the
perfect breeding ground for bitterness and conflict--for the evolution of a
survival-of-the-fittest system where well-heeled and educated parents get better services
for their kids because they can retain mediators, lawyers and independent experts and can
better press their case in intimidating school district meetings.
Being scrappy makes a world's worth of difference too. "The most
successful parents are the ones who walk into a meeting with the mind set that they're
walking into a fight--that they're going to stand their ground and do battle," says
Frank Paradise, executive director of the Autism Society of Los Angeles. "The parents
who walk in intimidated and meek will not get half of what those other parents get."
What parents want to get is some way to break down the social disconnectedness that lies
at the very core of the disorder.
Unknown Causes, Widely Varying Symptoms
Autism was first described by psychiatrist Leo Kanner in the 1940s. Its cause or causes
are still unknown, although both genes and environmental factors appear to be involved.
Its symptoms and severity vary tremendously from child to child: These days, in fact, it's
described as a "spectrum" of disorders. Autistic children may have mental
retardation or be uncannily brilliant. But what they have in common are brains that don't
seem to be wired to pay attention to signals even babies react to instinctively: A human
face. A mother's voice. Children playing. People stuff. Thus it's no wonder that an
autistic child tends not to meet a person's gaze or want to play, learn to speak or want
to communicate, pay any more mind to a mother cooing over a crib than a leaf twirling in
the wind. Studies, moreover, reveal that the disorder affects many parts of the
brain--structures involved in emotions, critical thinking, learning, judgment and paying
attention--creating deficits that place huge barriers in the way of sensing the world
normally--and of learning. The key to reaching the child, specialists say, is to
create a way for a child to focus on something long enough and often enough, in a simple
enough manner, that he or she can learn.
The results can be dramatic, the battles intense--as illustrated by the
experience of the Bothwell family. Fisk Bothwell, who lives in Long Beach, was diagnosed
with autism just shy of his third birthday. As is typical for a child with so-called
high-functioning autism, he taught himself to read at a precociously young age but was
indifferent to other people and soon stopped talking and making eye contact. And like many
children with autism, Fisk developed obsessions--lining up magnetic letters all day and
carrying them to different parts of the room in elaborate rituals that couldn't be
interrupted. Soon, Fisk couldn't go out in public because he would scream inconsolably
when his parents couldn't give him letters that he saw on signs.
Not long after Fisk's diagnosis, the Bothwells learned of a therapy
pioneered by Ivar Lovaas, a psychologist at UCLA. Called applied behavior analysis, it
uses rewards--goldfish crackers, playing with toys, praise--to teach children all kinds of
behaviors, lessons and life skills, step by tiny step, in intensive, one-on-one drills.
The idea is to coax a child out from a world where a thousand equally interesting
sensations pour in every moment, so he or she can focus on the "right"
things--and learn and reconnect. Applied behavior analysis, practiced with some variations
in many clinics worldwide, has been better-studied than most other autism treatments.
Lovaas' research even suggests that some kids can eventually lose all visible traces of
the disorder. Experts still hotly debate that contention.
But Fisk, in any case, was so far from "normal" that such
debates were hardly germane. The Bothwells decided to try it. At first, "he
didn't want to come here, he didn't want to look at me, he didn't want to sit still, touch
'blue'--he didn't want to do all these simple things we were asking him to do," says
his mother, Claire. "And he just screamed holy murder every time we asked him
to." The Bothwells persevered, and Fisk soon began to make major advances. The
family, full of hope, borrowed thousands of dollars to hire and train a team of students
to come to their home and teach Fisk many hours a week, under the supervision of the
Lovaas Institute. None of this came cheap. The price tag started at $30,000 a year; later
it increased to $60,000 a year. Yet despite a psychologist's testimony about Fisk's
dramatic progress, the school district refused to pay. Fisk, the district said, was
well-served by a special education class at his local grade school, one with 11 other
children who had language difficulties stemming from a variety of disorders. Fisk's mother
says her son received scant one-on-one attention in the class and was making no progress.
She and her husband legally challenged the school district--and won services for Fisk. It
was to be the first of several legal battles for the Bothwells.
Today, after five years of intensive intervention, Fisk goes to school
in a gifted classroom at a regular school. He has friends and loves Pokemon and riding his
scooter and is in many ways a regular 8-year-old boy. He isn't "cured": The
underlying brain abnormalities causing his autism haven't miraculously melted away. In a
recent psychological test, he still displayed striking gaps in his ability to understand
the feelings and motives of other people--"theory of mind" gaps that experts
deem central to autism. Recently, he's had problems getting organized in class--it's been
decided he needs an aide to help him focus--and has told his parents he's been teased by
some schoolmates. "It's never going to be over," Claire says. "No matter
how well he does."
The Bothwells have since helped other parents obtain services for their
children--kids such as 11-year-old Maimuna Elliott, whose mother, Haddy, is unable to
afford things such as independent psychological assessments to bring to district meetings.
Bruce Bothwell, a lawyer, helped Elliott take legal action against the district, and won
Maimuna, too, the right to 40 hours a week of ABA.
"Two weeks into the program, Maimuna was able to come to me and say, 'I want the
remote,' instead of just coming and stamping her feet and tantruming," Elliot says.
Today, two years later, Maimuna can brush her teeth, zip her jacket, tie her laces. But
she still has difficulty starting conversations and speaking in complete sentences. Where,
Elliott wonders, would Maimuna be now if she'd had intensive intervention early?
Providing for the individual needs of many autistic children "is a
challenge, especially now that more and more kids are being diagnosed," acknowledges
Warren Finn, an advocate for parents with special needs and a grandfather of a child with
autism. "It's not easy for [the districts]--but certainly the law is clear. It
requires districts to provide what that child needs to be educated."
Yet too often the districts try to squeeze children into whatever programs they have in
place, Finn adds, programs parents often believe are inadequate. School districts see
things differently. "We are very much committed to providing services for the
children based on individualized needs," says Gloria Lopez, an administrator for
special education with the Los Angeles Unified School District. "We are not in the
business of trying to deny any child what we feel they appropriately need.
"Sometimes," she adds, "there is a difference between what the parents
perceive the needs are versus what the school district feels the needs are of that
child."
Still, even L.A. Unified recognizes it could do better and is trying to improve its
services, Lopez says. She is directing an effort, in collaboration with autism
specialists, to set up several classes devoted to children with autism--ones where other
teachers can learn techniques and take them to their own classrooms throughout the
district. Some of the classes will focus on Applied behavior analysis. Others will use a
mixture of teaching methods. The goal, Lopez says, is to bring expertise into the school
district and match each child to the teaching strategy that fits him or her best.
Treatment's Past Taints It for Some
Applied behavior analysis is one of the most-studied interventions for autistic children,
but it isn't the only one and it isn't every parent or specialist's cup of tea. Some shy
away from it for historical reasons--in decades past not only rewards but also punishments
(electric shocks in the '60s and spanking in the '70s) were used to stop children from
injuring themselves or others. Those days are long gone, says Ron Leaf, a psychologist who
did research with Lovaas in the 1970s. "Unfortunately, some people still think of
those days and assume that's what's used today," says Leaf, co-director of Autism
Partnership, which provides services to autistic children in Seal Beach and several other
sites. (Leaf is helping L.A. Unified in its efforts to improve services for autistic
children.)
Other specialists feel the Applied behavior analysis approach is too
unnatural--too much like "training." La Canada-Flintridge's Ricki Robinson, for
instance, prefers to draw the autistic child out of his or her shell using a technique
called "floortime." In this method, devised by child psychiatrist Stanley
Greenspan of George Washington Medical School, trained therapists mock "play"
with a child in order to engage his or her attention. That way, goes the theory, the child
can learn to engage socially with other people as well as learn needed skills. Greenspan
claims much success with floortime, but there are no scientific studies published on the
technique.
"No one's been financing studies," protests Robinson, who's also impressed with
the results of floortime she's seen in her practice.
In the end, what may turn out to matter most is engaging the attention of the autistic
child--as early and often as possible. There may be more than one way to do that. But
neither ABA nor floor time will be the perfect treatment for all children with autism.
Every child with autism is different, and some children don't respond to these therapies.
And autism affects everything from speech to sense of balance--all of which may need
special attention.
Meanwhile, in the knowledge vacuum that exists today, alternative,
unproven therapies flourish, as parents look for something, anything, that will help their
child. Special diets. A gut hormone called secretin. "Facilitated
communication," "auditory integration therapy" and more. The common
threads: glowing testimonies but little hard science to show they work. There may be
validity to some of these therapies for some children with autism, experts say--but until
the research is done, nobody knows. Luckily, "parents are getting much smarter and
savvier about this kind of stuff--and parents are demanding that services be provided for
children. And that is good," says Freeman. "Hard work"--absent some miracle
cure--"is what works," she says.
Parents Look to Unproven Therapies to Solve Autism
Rosie Mestel, Los Angeles Times- 3/12/2001
Parents of autistic children are forever seeking treatments that might provide
improvement for a condition with no known cure. Though they may turn to therapies that
carry the stamp of mainstream medicine, they also turn to therapies that are alternative
and unproven. It's understandable, says Dr. Ricki Robinson, a La Canada Flintridge
pediatrician who specializes in autism. Not all kids respond well to behavioral
interventions, and parents are loath to put all their eggs in one basket. "If you
were the parent of a child with autism, you would be doing it too," she says.
Robinson makes sure parents know the facts by giving them a book listing mainstream and
alternative treatments and by discussing possible risks and benefits.
Some specialists, though, worry that parents may inadvertently do their
children harm. They are concerned, for instance, about chelation therapy, in which
children are treated with chemicals that help remove certain metals from the body. The
theory is that autism might be triggered from exposure to mercury, once used in the
preparation of certain vaccines. Experts are also concerned about treatment of autistic
children with antibiotics, which might add to the problem of antibiotic-resistant bacteria
developing from overuse of the antibiotics. Betty-Jo Freeman, professor of medical
psychology at UCLA, says she's perplexed about the use of a hormone, secretin, in the
treatment of autistic children. There's no good evidence that it helps, she says.
"You wouldn't give your child a psychotropic drug without some evidence, I
hope," she says. "Why would you give your child pig hormone?"
Secretin is one of the best-known alternative treatments for autism.
Not only pigs but also people make the hormone, which has a natural job in our guts. It
has been approved by the Food and Drug Administration to test whether people have properly
functioning pancreases, but is also being given to autistic children. The theory is that
the intestinal disturbances many autistic children appear to have may cause brain function
to go awry--and that secretin helps set things right again. Some parents report miraculous
improvements from secretin treatment, but scientific studies are not encouraging, says Dr.
Adrian Sandler, medical director of the Olson Huff Center for Child Development in
Asheville, N.C.
For instance, a study by Sandler and others published in the New
England Journal of Medicine in December 1999 found no difference in children given a
single dose of synthetic human secretin or a placebo. Since then, Sandler says, there have
been other controlled studies with one or several doses of the hormone. "All of the
studies," he says, "are consistent with showing no treatment effect."
Sandler believes that anecdotal reports of improvement after secretin treatment could come
from a parent's expectation of improvement and the fact that parents focus more on their
child after treatment. That in itself, he says, can lead to improvements in such things as
eye contact.
But Bernard Rimland, father of an autistic son and director of the
Autism Research Institute in San Diego, which supports a number of alternative autism
treatments, says that secretin therapy is very promising. He says doctors can be blind to
improvements they don't want to see. "These guys have a vested interest in the status
quo," he says. The studies have also been quite small, says Walter Herlihy, president
and chief executive of RepliGen Corp. in Needham, Mass., a company that makes secretin.
Preliminary results from a larger trial testing several doses of secretin on autistic
children who also have gut disturbances should be coming next month, he says.
Until more studies are done on alternative therapies, a parent's best
strategy is to take a long, hard look at what's being promised, says Ami Klin,
psychologist with the Yale Child Study Center in New Haven, Conn. "We tell parents,
the rule of thumb is that if someone wants to sell you something expensive and it takes a
lot of time away from interventions that do work but where nobody promises a cure--be
careful."
Although Autism, Asperger's Run in Families, Therapy Makes
a Difference
Rosie Mestel, Los Angeles Times- 3/12/2001
It's not unusual for a parent of a child newly diagnosed with autism to recall a
strange uncle who always lived alone, was painfully awkward with people and had an
obsessive interest in bicycles. Or, for that matter, for that parent to look sideways at
his or her spouse with sudden recognition. The lack of eye contact. The rigid need for
routine. An all-consuming hobby. That hatred of social gatherings. They are all traits of
autism and Asperger's, a milder form of the condition. Scientists now know that autism and
Asperger's syndrome run in families. Today, awareness about autism is so high that a child
with the condition is likely to get diagnosed, sooner or later. That wasn't the case in
earlier decades--especially for those on the milder end of the spectrum. And though it may
seem useless to get a label such as "mild autism" in adulthood, it can also be
helpful.
Understanding that one, or one's spouse, has a mild kind of autism can
lead to finding ways to deal with conflicts common in such marriages, says Tony Attwood, a
clinical psychologist in Queensland, Australia. Such conflicts arise, for instance,
because people with autism have great difficulty understanding the nuances of social
communication--nods, smiles and tone of voice. Therapy can help--but people with autism
and Asperger's are far more likely to benefit from cognitive behavior therapy than from
generic "tell me about your feelings" therapy, says Attwood. Cognitive behavior
therapy helps people reexamine their attitudes and build new skills for coping. "The
therapy that says 'how do you feel about . . .?' falls flat on our ears," says Liane
Holliday Willey, author of a book about Asperger's, "Pretending to Be Normal."
Willey and her daughter both have Asperger's syndrome. "We use logic and intellect to
find solutions," she says.
There are support groups for people with Asperger's and their spouses.
In L.A., a dozen or so people with Asperger's and high-functioning autism--members of a
support group called Adults Gathering, United and Autistic--meet regularly to talk about
the strain associated with being different in this highly social world. Spouses of people
with Asperger's can also glean support from one another through a group set up by Cape Cod
resident Karen Rodman, whose husband has Asperger's syndrome: Families of Adults Afflicted
with Asperger's Syndrome, P.O. Box 514, Centerville, MA 02632, http://www.faaas.org. Dealing with Asperger's in a
marriage can be terribly difficult, Rodman says.
Many people with Asperger's syndrome do not marry, but of those who do,
Attwood sees two patterns that seem more successful.
"One is: They choose someone who's very similar. They're both entomologists. They met
at university. And their view of a good time is going to Africa looking at beetles."
In other words, the marriage works because the kind of interest that can consume a person
with Asperger's is shared by the partner. "Or sometimes," says Attwood,
"they take a partner--usually it's the wife--who is very, very socially skilled. And
she scripts her spouse in many ways--'When your aunt comes to dinner, don't tell the joke
about the priest and the prostitute because she's a Catholic'--acts, in other words, as a
counterbalance to his social difficulties."
For instance, "Jill" (an Altadena resident who prefers that
her real name not be used) helps her engineer husband "Pete" with such social
scripts--reminding him over the phone, for example, to praise his younger daughter for an
achievement in school.
And--pragmatically--she writes her husband lists of the things she needs to make her
happy. "I've told him I need things. I need you to go walking with me sometimes. To
hold my hand sometimes. To read books with me sometimes. To look at the mountains and go,
'Ooh, aren't they pretty.' And he does it." They've devised ways for Pete to keep
close to each of his daughters. With the oldest, he goes to movies. With the youngest, he
does soccer. With the middle girl, though, nothing needs manufacturing: "Ann"
has Asperger's too. They both love computers, and whatever they do just seems to happen,
says Jill. One day, Jill, Pete and Ann went for a walk, and Pete--remembering his
script--stopped and exclaimed at the beauty of the moon. Ann turned to her dad and asked
him what on earth he was saying, why on earth would he say something like that.
"I don't get it either," whispered Pete, "but it works."
U.S. Study Backs Drug-Shock Therapy Combination
Reuters, 3/13/2001
CHICAGO, (Reuters) - Electric shock therapy, a treatment abused and vilified decades
ago, is emerging as a valuable and common tool to combat the most severe forms of
depression, researchers reported Tuesday. "It is time to bring (the therapy) out of
the shadows," remarked Richard Glass, deputy editor of the Journal of the American
Medical Association, which published a new report on the subject in this week's edition.
That study, from the New York State Psychiatric Institute, and the College of Physicians
and Surgeons at Columbia University, New York, found that a combination of lithium and the
antidepressant drug nortriptyline following shock therapy substantially lowered the
relapse rate of patients with major depression. The patients involved were resistant to
the usual drug-based depression treatments.
Shock treatment today is known as electroconvulsive therapy. Compared
to earlier times it is mild and produces a reaction more like a slight "shiver"
according to a spokeswoman for the study's principal author, Harold Sackeim. The
procedure, in which convulsion-producing shock waves are sent into the brain of a patient
under anesthesia, is now more common than hernia surgery or tonsillectomies, according to
information released by the medical association. In an editorial in this week's journal
commenting on the study and the procedure in general, Glass said the therapy got a bad
name in the middle part of the last century when abuse led to "bitten tongues and
even fractured bones and teeth caused by the induction of generalized seizures and the
painful effects of electroshocks administered without anesthesia when they did not
successfully induce a seizure with loss of consciousness."
Improper Use of the Therapy
Former Senator Thomas Eagleton's disclosure that he had undergone shock therapy forced him
from the Democratic party's 1972 presidential ticket as George McGovern's running mate.
The 1975 movie "One Flew Over the Cuckoo's Nest" painted an incorrect picture of
shock therapy being used for painful punishment, according to Glass.
The study published Tuesday was conducted from 1993 to 1998 at the
Carrier Foundation, Belle Meade, New Jersey, and at psychiatric facilities at the
University of Iowa, Iowa City, and Western Psychiatric Institute and Clinic, Pittsburgh.
The researchers said shock therapy is normally used only in cases where patients are
resistant to drugs, but the relapse rate exceeds 50 percent. In the study the combination
of the two drugs and the therapy cut the relapse rate to 39 percent. Sackeim said changes
in the timing of the drug treatments or in the ways which patients can be weaned off the
shock treatments could reduce the relapse rate "down into maybe even the 10 percent
range. That would clearly be an extraordinary accomplishment."
In the editorial Glass said the usefulness of shock treatments for
combating depression "are among the most positive treatment effects in all of
medicine ... yet this effective treatment too often remains in the shadows of stigma and
fear. The study ... is a good example of the growing scientific database that can usefully
inform clinical decisions about this treatment."
Jury Awards $5 Million in False Memory Syndrome Case
Associated Press, 3/17/2001
EAU CLAIRE, Wis. (AP) A jury ordered therapists and an insurance company to pay $5
million in damages to the family of a dead woman for making her falsely believe that she
had been abused by her relatives. The parents of Nancy Anneatra who had accused her
parents and brother of physically and sexually abusing her sued for damages caused by her
accusations and the jury decided Friday that she had been a victim of abuse by the
therapists, not her family. Jurors said Dr. H. Berit Midelfort of Edina, Minn., and
Celia Lausted of Colfax, along with Midwest Medical Insurance Co., should pay Delores and
Tom Sawyer and their daughter's estate $5.08 million. The Sawyers, of Motley, Minn., cried
as the verdict was read. ''This is a tragedy that has happened to the Sawyer family,
a lot of families,'' said Madison attorney Bill Smoler, an attorney for the family. Thomas
Jacobson, an attorney for Midelfort, and Lausted's attorney, Thomas Misfeldt, did not
comment.
The case centered on so-called False Memory Syndrome described by some
as a psychological condition in which a person believes he or she remembers events that
have not occurred. Anneatra, then Nancy Sawyer, received counseling in 1984 from Lausted
and a psychiatrist not named in the lawsuit. She was in her 20s at the time. After a year
of treatment, she accused her parents of physically and sexually abusing her as a child.
The Sawyers denied the abuse, but the daughter severed all ties with them and
changed her name. In 1987, she was treated by Midelfort, and a year later she sued her
parents for civil damages for alleged abuse. The suit was dismissed. She continued
receiving therapy until she died in 1995.
On the Net: False Memory Syndrome Foundation: http://www.fmsfonline.org
Study: More Than a Third of Young Adults in State Have
Drinking Problem
Associated Press, 3/17/2001
HARTFORD, Conn. (AP) More than a third of Connecticut's young adults have problems with
alcohol abuse, according to a recent survey by the state Department of Mental Health and
Addiction Services. The study, to be released next week, also found that residents of
wealthy towns had similar drug use habits as those in the inner city. The six-year study
of substance abuse patterns of criminals, high school students, welfare recipients and the
general population is the first of its kind in Connecticut. Officials will try to use the
information to determine how money for treating drug and alcohol problems is allocated
statewide. ''I don't see these studies as being revolutionary,'' said Alfred P. Bidorini,
director of program analysis, coordination and support for the addiction services
department. ''They're building on a body of knowledge and may be changing some assumptions
regarding who needs treatment.''
The study included a telephone survey of 6,866 adults in Connecticut.
According to the report, 36.8 percent of adults ages 18 to 29 said they had alcohol abuse
problems that put them at risk of accidents, alcoholism and social and health problems.
Young adults had the highest rate of alcohol problems. A large portion 22.1 percent of
state residents 30 to 39 said they also have trouble with alcohol abuse.
Bidorini said he was especially surprised with the finding that
residents of wealthy towns use drugs nearly as much as inner city residents. Seven percent
of adults in the state's wealthiest towns including Greenwich and Darien were deemed to
need treatment for abuse of any substance, compared with 9 percent in the poorest cities
in Connecticut. In the wealthy towns, 6.6 percent of residents had problems with alcohol,
while 8.4 percent of city residents had alcohol abuse problems. About 3.8 percent of
wealthy town residents needed treatment for illegal drugs, compared to 4.6 of city
residents. Illegal drugs include heroin, cocaine and marijuana. ''I think this is very
telling; there is a need for treatment in all communities, it's not just the inner city,''
Bidorini said.
But the information could be misleading because it relies on the
honesty of the survey participants, Bidorini said. And drug abusers are less likely to
have telephones, he said. The study also found that adolescents in the suburbs have far
fewer problems with alcohol and drug abuse than their city counterparts, in contrast to
the adults. And about 60 percent of people arrested on any charge need substance abuse
treatment, the report says. Officials with the Department of Mental Health and Addiction
Services plan to present information from the report Thursday to members of 15 regional
action councils. The councils prepare plans to treat substance abuse problems in their
geographic areas.
The Trouble With ADHD
Arthur Allen, Washington Post- 3/18/2001
It's a struggle for Andrew Fraser just to be here. He is sitting politely in the dining
room of a Silver Spring church, where each Thursday morning all 36 students at the tiny
Quaker middle school Andrew attends gather for silent meeting. The season is midwinter and
the group, described by the school's headmaster as mostly "bright
underachievers," is midway between childhood and teenagerdom. Some are dressed
plainly, looking like kids whose clothes were picked by their parents; some wear
camouflage and Eminem T-shirts. In the opening moments of worship, the room is remarkably
quiet. The silence is finally broken by a teacher who mentions that in this season of
short days, ancient cultures treasured light, which explains why winter celebrations
center on lavish displays of it. In the Quaker tradition, you pray for someone by
"holding him in the light," and the teacher suggests that the students of
Thornton Friends Middle School might do that now. A boy raises his voice to hold his
mother and little sister in the light. His father, he says, is leaving the family --
"he says he hates me." Soon others chime in, sharing worries about sick
grandparents and aggrieved friends. Some of it is very moving. But after a while a certain
adolescent silliness creeps in. Andrew, a rail-thin eighth-grader dressed in white pants
and a white T-shirt with a blue skateboarding jacket, announces he is holding in the light
a gym teacher who twisted his knee. A girl holds her hamster in the light because
"he's even getting too old to crack his own peanuts."
Andrew has been struggling to get into the light his whole life. At 6
months he fell off the growth curve; in his toddler years, rough textures and loud sounds
vexed him. When he was in second grade, a psychiatrist declared Andrew to have the worst
case of "attention deficit disorder" he'd seen in 27 years. Andrew ricocheted
and fidgeted through grade school, unable to tolerate more than a few minutes in class. He
couldn't bear to write. He left his seat constantly. He got into scuffles all the time.
Home life wasn't much better. The Fraser home, a Rockville rambler with a sunken den,
frequently shook with Andrew's tantrums. One morning, when Andrew was in fourth grade, he
went after his older sister with a knife. Another, he was so enraged at life that he
ripped the folding doors off his closet and threw them into the back yard, where he
stomped them into slivers. Most mornings Andrew was a reptile coiled in his room, so
unready to face the cruel exposures of the school day that his father had to dress him.
Yet Andrew could be a nice kid -- open, friendly, communicative. For that grace his
teachers and therapists never entirely gave up on him. "Through it all, Andrew was
liked," says his mother, Wendy.
His parents took him to a psychiatrist who diagnosed attention deficit
hyperactivity disorder (ADHD) with "co-morbidities" -- depression and possible
conduct disorder. There were drugs to treat each malady. By the summer before middle
school, when he was all of 11 years old, Andrew was on an enormous dose -- 70 milligrams
-- of Ritalin for his ADHD, plus two antidepressants, Prozac and Pamelar, and the
anti-hypertensive Clonidine, to counter the side effects of Ritalin. To make sure his
heart could stand the stimulation of so much Ritalin, Andrew had his blood pressure
checked weekly. Yet he seemed as distracted, irritable and unhappy as ever. Sometimes the
drugs seemed to be making things worse. His father, Bruce, a stockbroker, and Wendy, a
nursing administrator, were at wit's end. "He'd cry. He'd threaten to jump out of the
car. It was hard to see how he'd make it in middle school," Wendy recalls.
That summer, she got a call from counselors at a day camp that Andrew
was attending. Her son had threatened to run into the street, they said, and was marauding
around the place with a branch, intimidating counselors and other kids. Come get him. So
they did. But this time, when they took Andrew to his psychiatrist, it was clear they had
arrived at a threshold. The psychiatrist suggested putting him on a fifth drug, the
antipsychotic Risperdal, whose side effects, the doctor explained, included tics, tremors
and the risk of permanent brain damage. Andrew's parents were floored. "He didn't try
to hard-sell us," Bruce recalls, but it dawned on them that ever-stronger behavioral
drugs were all the psychiatrist had to offer. And Risperdal was "the last club in his
bag."
Children who are hyperactive and distracted, who can't focus on what's
in front of them or control their behavior, have always been with us. They entered the
medical lexicon in 1902, when a British physician, George Frederic Still, described a
group of children with "morbid defects of moral control." Still thought he could
detect a child's moral propensities by taking measurements of his skull. Since then, the
medical definition of this disorder has certainly undergone many revisions. But in some
ways it has come full circle.
For years, the textbooks called it minimal brain dysfunction, then
hyperkinetic syndrome of childhood. In 1972, Virginia Douglas, a Canadian researcher,
characterized it as attention deficit disorder, and her terminology became the accepted
way of referring to children like Andrew Fraser. It was part of a turning point in child
psychiatry toward defining mental illnesses more on the basis of observable behaviors and
less on a patient's life history. This approach located the problem in the child's brain
-- separated it, in a way, from the child's character. That opened the way for large-scale
use of medication to change the behaviors.
In 1980 the American Psychiatric Association's Diagnostic and
Statistical Manual of Mental Disorders broke ADD into two main categories -- attention
deficit with or without hyperactivity. By the 1994 edition, the disorder was called ADHD
-- attention deficit hyperactivity disorder -- and the diagnosis was both more nuanced and
broader. By some estimates, 10 percent of school-age boys in the country (and a much
smaller percentage of girls) could fit into that definition. The scientists who study ADHD
believe these children are predisposed to it by particular patterns of brain chemistry,
with most cases having some sort of genetic basis, others possibly the result of
environmental factors during pregnancy or after birth. Because there are no blood-borne
proteins that define when a kid has ADHD, no lumps on the head or in it, no physical marks
of any kind that clearly distinguish a child with ADHD from anyone else, the diagnosis
remains controversial in society at large, even as the number of children -- and,
increasingly, very young children -- who are treated for it is skyrocketing. Once upon a
time, kids like Andrew were termed "fidgety Phils," or "behavior
cases," and were stuck in the corner or the principal's office until they shaped up
or left school. Some went on to become corporate executives. Others became jailbirds. Many
struggled with the responsibilities of adult life, but others basically got it out of
their systems after puberty.
Today an estimated 3 million children in this country have been
diagnosed with ADHD -- including perhaps 200,000 between age 2 and 4. With numbers like
these it is not surprising that the diagnosis is controversial or that it has become
enmeshed in many of the cultural battles of the past two decades, America's fretful
internal argument over the proper way to parent and educate the young.
While scientists struggle to provide a unifying theory of what's
different about the brains of children with ADHD, critics charge that it's wrong to view
these kids' behavior as pathological in the first place; the fault lies with overcrowded
schools, stressed-out parents with little time for the children and a society that wants
to dull its rough edges and is intolerant of anything but success. Other, less radical
critics of the system still believe that ADHD is severely over-diagnosed in America.
At the heart of the controversy over hyperactive disorder is that most
children diagnosed with it get the same treatment: a stimulant. Stimulants have been used
to treat hyperactivity and learning disabilities since 1937 when an Oregon scientist named
Charles Bradley noticed that Benzedrine perked up the attention levels of several children
in the special school where he worked. It wasn't until the 1960s that doctors began
regularly treating hyperactive children with methylphenidate -- trade name Ritalin.
Researchers had long reported that Ritalin at low doses had a paradoxical effect -- it was
"speed" that slowed children down. Eventually it was recognized that stimulants
had the same effect on almost everyone: They improved short-term concentration. It was
just that people with ADHD needed more help focusing than the rest of us. There was a
brief backlash against Ritalin in the 1970s, when some studies suggested it might stunt a
child's growth, but later research indicated those worries were overblown, and by the
early 1990s, when society had generally embraced the idea that many problems could -- and
should -- be dealt with by a pill, Ritalin had taken off again.
Even the biggest proponents of drug therapy agree that drugs work best
in combination with behavioral modification and talk therapy. But talk is not cheap in the
era of managed health care. And the thing about Ritalin and other stimulants is, they get
results. Study after study has shown that low-dose stimulants will improve short-term
concentration and reduce impulsivity and fidgetiness in about three-quarters of the kids
who get them, as long as they're on them. These kids will often do better in school. They
won't anger and alienate friends and teachers as much. That makes their parents saner. As
a result of these things, the children often feel better about themselves.
How does Ritalin work? As with much about ADHD, no one is exactly sure,
but it is evident that Ritalin increases the availability of dopamine, a chemical that's
key to movement and attention and other nervous functions, to certain cells in the brain.
By adding to the dopamine pool, the drug seems to speed the flow of impulses through the
circuits that help people control the instinct to respond to each and every stimulus. In a
way, you could say that Ritalin strengthens willpower. Or, as Ellen Kingsley, the mother
of a 13-year-old who has been on ADHD drugs since age 5, puts it: "It enables him to
do the things he wants and needs to do and would not be able to do." Kingsley, a
former Channel 9 consumer reporter who now lives in Houston and puts out a magazine about
ADD, says her son T.K. would never have made it through school without drug therapy. Like
many parents of children with ADHD, Kingsley is impatient with people who don't recognize
that kids like hers are deeply impaired and need help. "I could give him all the
therapy in the world, but it won't sink in without medication because he can't attend to
the task," Kingsley says.
Parents with a morbidly hyperactive or inattentive child, most
specialists agree, should be no more reluctant to try Ritalin than to give eyeglasses to a
nearsighted child, if Ritalin will calm their child and improve his or her life. But among
the millions of parents who have put their children on a permanent ration of
behavior-modification drugs, many have undoubtedly had to overcome an initial queasiness
and feeling of guilt. Laura and Barney Gault certainly did last fall, when a pediatrician
suggested that their son, Sam, might need to be medicated. "My first thought was
denial," recalls Barney, Sam's father. "He's a kid -- you aren't going to do
this to my son. And then I was a little sad. I was thinking, 'Are we going to alter his
personality?' "
It is a dreary winter evening in the cafeteria at Olde Creek Elementary
School in Fairfax, and Sam's den leader, Jeff Bush, is attempting to get Sam and eight
other rambunctious 9-and-10-year-old Webelos to drill for their civics merit badge. The
den leader's presentation isn't really pulling in the audience. The boys, a few in their
blue uniforms with yellow kerchiefs, most in ordinary kid clothes, are popping up and down
in their seats like ducks in a shooting gallery. They all seem to be talking at the same
time, except for the kids who are falling off their chairs. Bush's questions invite an
array of non sequiturs. "Who is the vice president?" he asks.
"Sore Loserman!" one scout responds. "Can a 14-year-old
be president?" someone else jumps in. "My sister could be president.
Cool!!" "Your eyebrows look like the weatherman on Channel 9." At the far
end of the table, quietly fabricating spitballs and loading them into a straw, sits Sam
Gault. You wouldn't necessarily know that he's the one with ADHD. He doesn't seem hyper.
And he's very focused -- not on Jeff Bush, unfortunately, but he's very focused on his
spitballs. He fires across the room at his mother, Laura, and narrowly misses.
Laura, with short blond hair and dangling earrings, is keeping a close
eye on her son. Sam is the shortest in the group, thin and gap-toothed, with blue eyes and
diaphanous skin. On the previous Saturday, the den took a field trip to a firehouse.
During the tour Sam got bored and started making silly remarks: "Is this an atomic
bomb?" he asked about a high-pressure hose. "Is this a nuclear weapon?"
Finally the fire chief turned and scolded him. Laura finds such incidents painful and
hopes that, eventually, Sam will be embarrassed, too, and change his behavior. "When
kids are continually singled out, it just whittles away at their self-esteem," she
says.
It was partly concern about self-esteem that led the Gaults to take Sam
in for a psychiatric evaluation more than a year ago, when he was 8 and in third grade.
Sam was bright and thoughtful and didn't do poorly in school, but he couldn't sit still.
Time and again, his second-grade teacher reported that Sam had trouble following through
with her instructions. He raised a ruckus in the halls and played the class clown. He
literally climbed the walls at times. Sam was an inquisitive, detail-oriented child, but
his mind had a way of meandering from the critical to the banal. You could hear it in his
speech as he drifted from one topic to the next -- teachers, Game Boys, his ADHD --
without clearly completing his thoughts on any of them.
Laura Gault had had forebodings before Sam was diagnosed with ADHD. She
felt that Sam's ADHD might have had a hereditary connection -- Sam's paternal grandfather,
who's now in a nursing home, probably had ADHD, though in his era, of course, such a thing
was not recognized. Even as an adult, he was impatient and impulsive like Sam, and
sometimes he blurted out off-color remarks in mixed company. And that's partly what
bothered Laura about her son -- the social improprieties. "I noticed that the other
kids would be acting out, but they could stop when an adult said stop," she says.
"Sam really couldn't stop. He'd just continue to wiggle." Kids who wiggle too
much stand out in a big classroom, where sheer management is a real challenge. Sam's class
had 28 other children.
After Sam was diagnosed with moderate ADHD, the Gaults were urged by
their pediatrician to start out with a behavioral modification routine. They got his
teacher to provide daily reports on Sam, and rewarded good behavior with trinkets -- a
Pokemon card here, a trip to the ice cream parlor there, a sleepover for being especially
on-task. But within a couple months it was clear this regimen was not enough to motivate
Sam. That's when the Gaults turned to Adderall, which last year surpassed Ritalin to
become the most prescribed stimulant in America. "He didn't have the maturity or
ability to control his behavior on his own," says Laura. So Sam began taking the drug
just after Thanksgiving 1999, and his parents waited to see how it would affect him.
Tonight, as his den leader winds up the civics session and the games begin, the effects of
Adderall have long since worn off, and Sam is lost in his own world. The boys have cleared
tables away and divide into teams for sock ball, which is dodge ball using balled-up
socks. Everyone runs around, yelling and throwing sock bombs at the kids on the opposing
team. Sam wads up a pair of socks to make what he calls a "megabomb."
"Throw it, Sam!" shout two of his friends. Sam does not respond. He is carefully
folding the edges of the sock to make a rounder, more compact megabomb. One quality of
Sam's mental architecture, it's plain to see, is a certain perfectionism. For better or
worse, Adderall hasn't done anything to change that. "Come on, throw it, Sam!"
Finally he throws and -- whack! -- the sock bomb smacks a boy named Chris as he attempts
to flee. Teammates cheer. Sam betrays no emotion but lets out a belch of conquest.
"He's very proud of that," Laura says, rolling her eyes.
Notwithstanding that ADHD can be a serious disease, the diagnosis of
ADHD in America is an inexact science shaped in large part by the socioeconomic milieu of
the kid in the middle of it. All it takes is a look at the diagnostic guide to see that.
The guide divides ADHD into three types: inattentive, hyperactive/impulsive or combined. A
hyperactive diagnosis requires that the child exhibit six symptoms from a list that
includes fidgeting, frequently leaving classroom seat, interrupting often, excessive
climbing and running about, excessive talking, inability to quietly engage in leisure
activity, acting "as though driven by a motor." An inattentive diagnosis is for
children with symptoms that include failure to listen, failure to follow through, tendency
to lose things, etc. It's clear that subjective judgment enters into any diagnosis --
almost anyone with a child could imagine him or her meeting the diagnostic criteria, on a
bad day at least. To be sure, the diagnostic guide also requires that to be ADHD, the
symptoms must exert a significant impact on the child's life at home and school. But
"significant impact" requires a context and that's where the controversy about
ADHD begins.
Every November, just after parent-teacher conference days in many
schools, Barbara Ingersoll, a leading ADHD diagnostician in Bethesda, begins to get calls
from parents. Ingersoll, a psychologist, performs assessments of children that parents can
use to procure medications, therapy or classroom accommodations -- all tools employed to
get ADHD children through school with a modicum of success. "After the parent-teacher
conferences, when the honeymoon's over," the parents start seeking assessments, she
says. "Wouldn't it be great if we had schools that let them be themselves?" she
asks a bit facetiously. "But it ain't going to happen. You can't let them run
amok."
Often, it's not the parents but the schools that drive the diagnosis.
The principal of an elite Washington private school several years ago gave the parents of
a 5-year-old kindergartner a gentle bit of advice that was almost an ultimatum. The child,
who had a photographic memory of almost anything ever read to him and who could spend
hours working on art and science projects, was unable to sit still in the classroom. The
school referred him to another D.C. psychologist -- not Ingersoll -- for an assessment
that lasted three hours, cost about $2,500 and resulted in what the parents viewed as a
preordained conclusion: Their son had ADHD. "He may need to be on Ritalin," the
principal said, "to stay in the school."
The family decided to get a second opinion. A child psychiatrist at
Washington's Children's National Medical Center rolled his eyes when he heard about the
diagnosis. ADHD was a "garbage can label," he told them, the diagnosis for any
kid who was out of the box. Their boy was too young to be diagnosed definitively, he said,
and the diagnosis wasn't a trivial matter. Ritalin could mask an underlying condition, or
it could cause serious side effects. The kindergartner had tics, and children with tics
sometimes developed full-blown Tourette's syndrome after going on Ritalin. Deep in their
guts it felt wrong to the parents and they worried it would stifle their son's nascent
creativity. When he was reassessed at a clinic two years later, the ADHD label turned out
to be wrong. The boy was dyslexic. He wouldn't sit still in school, it turned out, because
he couldn't make sense of the words put in front of him. In the meantime, the family had
switched their child to a public school in Maryland.
What almost happened to this family captures society's fear of Ritalin,
that the drug is being used to convert spirited children into docile sheep. But for most
children on medication, the real problem isn't that the "meds" turn them into
robots; it's that they rarely work as one would hope. At least half of the children
diagnosed with ADHD also suffer from complex mixtures of other problems -- learning
disabilities, anxiety, depression -- that can mandate a complex mixture of other drugs.
Theoretically, you can find a drug to treat each symptom. But the relationship between a
behavior and the underlying biological facts isn't cut and dried, particularly in
children. Sometimes, Ingersoll acknowledges, she sees children with mood disorders who've
been misdiagnosed as ADHD and put on high doses of stimulant that leave them subdued and
distant. "You get better behavior, but it's using medicine as a chemical
straitjacket," she says. "You get zombies."
Others wonder if some of the "co-morbidities" described by
the psychiatrists are caused by the medicines themselves. "Here's the conundrum -- I
put you on stimulants because you're running around the classroom too much and you're too
impulsive and in people's faces," says Julie Magno Zito, a professor at the
University of Maryland School of Pharmacy who tracks the growing tendency to prescribe
mind drugs for preschoolers. "About three months later, it looks like the treatment
works, and then you go home at night and need medication to go to sleep. Enter Clonidine
to help you sleep. Now we've gone from one drug to two. I have to worry about
interactions, a wider spectrum of side effects. Then after a couple months it becomes
apparent that you cry more easily, you're more sensitive. Now somebody says, 'He needs an
antidepressant.' Now you're on three drugs. We could call it co-morbid depression. But to
me it's equally possible that it's behavioral medicine toxicity. You probably wouldn't
have the insomnia and crying if the other drugs were not on board. You can't just keep
treating symptom by symptom."
Last February, Zito and a colleague, Daniel Safer, a child psychiatrist
at Johns Hopkins University, made headlines when they published an article in the Journal
of the American Medical Association that tracked a threefold increase in the use of
stimulants, antidepressants and other psychotropic drugs among 2- to 4-year-old Medicaid
patients from 1991 to 1995. The article set off a new round of critical news stories about
overuse of psychotropic drugs. And like previous Ritalin scares, the uproar put many
physicians and parents who believe the drug can save lives on the defensive.
"When you ask me why I put a child on four drugs, I say look at
asthmatics," says Larry Silver, a former NIH official who now has a large child
psychiatry practice in Rockville. "With asthma you have multiple maintenance and
emergency drugs, and there's a reason for each of the psychotropic medicines, too."
"The people who tend to criticize the use of these medications," he adds,
"are usually in the media, or people who've never had to live with or treat the
patients."
For a long time, Andrew Fraser and his parents hewed to this logic and
followed the pharmaceutical trail wherever their psychiatrist advised them it led. They
spent thousands of dollars and hundreds of hours in therapy and classes and doctor's
appointments for Andrew. But when the psychiatrist suggested Risperdal, with its terrible
potential side effects, it was a step too far. "We've got to try something
else," Bruce Fraser told his wife. And so they stepped out of the mainstream and into
the Bethesda office of Peter Breggin, who provided an unexpected answer to the problem of
their son. "Andrew," Breggin said, looking at the thin, freckled-faced boy with
twinkly blue eyes sitting in front of him, "they say you're mentally ill, my friend.
But actually you're a brat."
Peter Breggin, whose office is within mortar distance of the National
Institute of Mental Health, is the bete noire of psychiatrists. He has written several
books attacking the misdiagnosing and overmedicating of America's children. Some view him
as his profession's prickly conscience, but his point of view, that there is no such thing
as ADHD, is a fringe one among psychiatrists. Many of them believe that his crusading ways
have done more harm than good by driving parents away from treatments that could help sick
kids. Yet at least a few parents with difficult children view him as a savior who gives
voice to their doubts and worries. Breggin, who looks vaguely like comedian Steve Martin
and speaks with a New York accent, believes that ADHD is essentially a "bunch of
behaviors that make it difficult to teach kids in a big classroom. That's all it is! You
wouldn't have a parent coming in and saying, 'Joey squirms in his seat.' What parent would
claim that was an illness? It's the teacher saying, 'You're out of control, take some
Ritalin.' "
Most of the worst symptoms of ADHD, he believes, are caused by the
drugs that are used to treat it. "Once psychiatry went in the direction of drugs, it
basically lost its knowledge and skills," he says. "If you look at the leading
psychiatric journals today, there's nothing about family therapy, child development, how
to handle an out-of-control kid. It's all about drugs. They act as if children don't need
parents, they need drugs! Quite literally! We've abandoned our kids."
Breggin is the medical consultant in three separate class action
lawsuits that were filed last September on behalf of children medicated with Ritalin. The
lawsuits, filed in New Jersey, Texas and California by some of the same lawyers involved
in anti-tobacco litigation, accuse Novartis Pharmaceutical Corp., the maker of Ritalin,
the American Psychiatric Association, and CHADD, an advocacy group for people with ADHD,
of conspiring to poison America's children. Those being sued have called the lawsuits
unfounded and have defended Ritalin as a good drug and its use as good medicine.
"It's ludicrous to think that by seeking science-based advice for our problems we are
conspiring to medicate the nation's children," said Clarke Ross, the head of CHADD
(Children and Adults with Attention-Deficit/Hyperactivity Disorder).
"Breggin's effect has been to make families wary of medical
treatment," says Laurence Greenhill, a Columbia University child psychiatrist who is
leading a clinical trial of Ritalin for preschoolers, which he hopes will provide a means
of testing Breggin's theory that Ritalin itself causes brain changes that scientists
attribute to ADHD. "He feels that the kids don't get enough tender loving care, they
aren't hugged enough. But he doesn't believe in evidence-based medicine and that's the
standard now." The Frasers had had enough of evidence-based medicine when they first
stepped into Breggin's office on October 26, 1998, and they instantly took to him and his
message. Breggin told them that "in the overload of daily issues we'd failed to pay
attention to teaching basic human dignity," Bruce recalls. "Breggin saw a lack
of attention had been paid to the basic nurturing of a child. I didn't take umbrage. It
sounded reasonable."
In the first few months of 1999, Breggin took Andrew off the
medications, one by one. In family and individual therapy, at $175 a crack, he told the
Frasers that Andrew had to learn to act civilized. He could learn to check his impulses,
to pay attention, to show respect. Willpower was his to grasp. Wendy and Bruce had to love
him tough and tender. The Frasers were happy to toss out the biological psychiatry, with
its talk of titration and syndromes and EEG patterns. Ceremoniously, in the presence of
his parents, Andrew flushed the leftover pills down the toilet: Out with impersonal
chemicals! Human beings rule!
But Andrew did not immediately improve. He struggled through a year at
a public middle school in Rockville, then a year in a Montgomery County special education
program. Finally, this fall, Andrew began something new -- Thornton Friends. The small
Quaker school in Silver Spring was created expressly for kids with promise who had trouble
sitting still or paying attention, kids who got teased or harassed in traditional schools,
kids who were a little different -- but reachable. Thornton Friends stressed individual
growth and community feeling. "We want to help people understand themselves and find
a style that works for them," says the headmaster, Michael DeHart.
Roughly one-third of the kids in Thornton's middle school are on
psychotropic medications of some kind, DeHart says. He agrees with Breggin, who has
written positively about Thornton, that the surge in prescription drug use in children
reflects our society's anxiety to produce kids who fit expectations, and its inability to
create schools that handle their needs. But he also believes -- unlike Breggin -- that
drugs sometimes are necessary. "It's clear to us that some kids, in order to make it
work here, need to be on medication. That's where we kind of part ways with Peter."
When Andrew arrived at Thornton, the administrators were up to the
challenge of educating a drug-free Andrew. But it wasn't a lovefest. In his first three
months Andrew showed little patience and a lot of anger. In the middle of English once,
he'd gotten up and yelled that he hated poetry. "I'm not going to say Andrew needs to
be medicated, and I'm not going to say he doesn't," says Jonathan Meisel, the
principal of the middle school. "There have been times when it's been very difficult
for him. He's very easily distracted. Does that mean it's not worth continuing to try
being off them? I'm not sure. Ultimately, is this the right place for him to be as a
student, medication aside? We don't know." Sitting on the couch in Meisel's office,
fiddling with the soles of his tennis shoes, Andrew says he is embarrassed to tell old
friends he goes to this school. "I hate it here," he says matter-of-factly.
"A lot of kids here have a lot of problems. They feel like they don't fit in. They
are like really big dorks."
At the same time, Andrew, now 13, knows he never wants to take
medication again. He hated himself on drugs: "Nothing seemed fun; everything seemed
boring." His goal is to get back to public school, which he knows will be impossible
unless he shapes up. "I don't want to, but I think I'll end up here," he says.
"I'm going to try to make do with what I've got." Do Andrew and Sam do what they
do because of flaws in the wiring of brain circuits that inhibit inappropriate action, or
is the apparent difference in their brains more in the nature of an evolutionary mismatch
with modern life, an alternate state of readiness that represents a holdover from
prehistoric times when extremely alert, impulsive people presumably had advantages in the
struggle to survive? These are two of the untestable hypotheses of pop psychology
concerning ADHD.
This much is clear: Our brains evolved with a great deal of variation.
If children's height was as variable as the size of their brains, some would be giants
stooping to get in the classroom door each morning while others would barely be tall
enough to reach their computer keyboards. That fact poses one of the formidable challenges
for researchers such as Xavier Castellanos, a doctor who has been studying ADHD for a
decade in the child psychiatry branch of the National Institute of Mental Health in
Bethesda. "Some kids' brains are twice the volume of those of other kids, with both
completely normal and healthy," he says. "There's a wide range in brain volume
that we don't understand."
For the past several years, Castellanos has been studying the brains of
ADHD children as they appear in magnetic resonance imagery (MRI). He's doing the
measurements to see if size can tell us something about the seat of abnormality. The
current theory is that ADHD may derive from abnormal neural circuits linking the frontal
lobes, the deep brain structures called the basal ganglia, and the cerebellum. But
Castellanos, 47, with a gray beard and wire-rim glasses, is the first to admit how few
facts have been established. "The problem with neuroscience at this point is that
everything in the brain seems to be related to everything else," he says. "It's
like you're attempting to make out which notes of a symphony come from the different
instruments, but you are listening from the hall through the wall with a
stethoscope."
Castellanos and others have found that the brains of children with
carefully diagnosed ADHD are approximately 4 percent smaller, on average, than those of
healthy children. Some parts of the brains of ADHD children can be particularly small --
the posterior-inferior vermis, a tiny segment of the cerebellum, for instance, is 10 to 15
percent smaller, on average. Castellanos doesn't want to make too much of that -- or too
little. For the record, he doesn't know what that teaspoon-size region of the brain does.
But he was extremely excited when a study published last May found that in macaque monkeys
the posterior-inferior vermis was packed with dopamine receptors. That's interesting to
Castellanos because an inadequate supply of dopamine is believed to hamper attention and
self-control. So the smallness of the posterior-inferior vermis in ADHD kids might mean a
shortage of the right neural circuitry. The smaller the brain size in these children, the
worse the ADHD symptoms tend to be. But there's an awful lot of variation, Castellanos
says. Two-thirds of the brains of ADHD children are indistinguishable, in size, from those
of healthy kids. If you're a skeptic, you say size has nothing to do with it.
Similar caveats cover the genetic work on ADHD so far. "My
favorite nightmare is there are going to turn out to be 300 or 500 genes, each of which
contributes a couple percent of risk here and there," Castellanos says. The leading
candidate gene for ADHD is a variant of the gene known as DRD4. This variant apparently
causes a receptor on certain brain cells to have trouble sucking dopamine out of brain
synapses. That presumably slows the feedback messages in the brain that inhibit impulses.
But you can't call it a defective gene because it turns out fully 30 percent of the U.S.
population has it, and not all of those people have been diagnosed with ADHD. And not
everyone with ADHD has that particular DRD4 gene variant. Moreover, the population of ADHD
patients with that gene form might even have a relatively mild set of symptoms. In a study
published last year in the Proceedings of the National Academy of Sciences, researchers at
the University of California at Irvine found to their surprise that among ADHD patients,
the ones with the "ADHD" form of the DRD4 gene were actually less impaired than
study participants who had a normal DRD4 gene. At least two drug companies are said to be
working on DRD4-related drugs that could be used to improve the brain circuitry of ADHD
patients. But Jim Swanson, one of the UC-Irvine professors involved with the study, has an
intriguing hypothesis that the ADHD patients with the suspect DRD4 variant might be the
subgroup that benefits most from behavioral modification strategies -- rather than
medication.
Because it was treatment, rather than diagnosis, that was the most
contentious element of the ADHD debate, the National Institute of Mental Health set out to
settle the issue of how best to treat ADHD by funding a six-site, 14-month study comparing
Ritalin with behavioral modification and combined therapy. The researchers who designed
the study included Ritalin advocates like Columbia's Laurence Greenhill and behavioral
modification proponents such as Swanson. Published in December 1999, the study found that,
overall, combined therapy worked best, but drugs alone were significantly more effective
than behavioral modification therapy alone.
Swanson was surprised. "We thought intensive behavior modification
would meet or beat the medication effects, and it didn't," he says. "We have to
face the facts." But there was another way of looking at the study. More than
one-third of the 145 kids in the study who were treated with behavioral techniques alone
improved their ADHD symptoms. Which means, in Swanson's words, "If there are 3
million kids medicated in the United States, maybe 1 million of them could have a good
response to non-drug therapy." And that would be a good thing. Because the drugs have
side effects, and they don't work perfectly, and there will always be parents who, for a
variety of reasons, refuse to give their kids mind-altering chemicals. "I don't think
the reluctance to medicate children is ever going to go away," says Norman Fost, a
pediatrician who heads the medical ethics program at the University of Wisconsin medical
school. "After all, as Woody Allen said, the brain is the second most important
organ. You can get a new body part and feel much better, but if your brain gets screwed up
it's you who gets screwed up. Your brain is who you are."
Before she started him out on Adderall 16 months ago, Laura Gault wrote
a letter to Sam that explained his disorder and compared the drug to the glasses a
nearsighted kid would have to wear. She wanted him to have something to look at in case he
started to worry about being called ADHD. Sam tried to avoid telling friends at school
that he had the condition; one reason his parents chose to give him Adderall was that it
was long-acting. A single dose, it was hoped, would get him through the entire school day.
Kids on Ritalin, which the body metabolizes faster, often have to see the school nurse at
lunchtime to get a booster dose -- and Sam felt that would be embarrassing. In the first
month on the drug, Sam lost four pounds, and he was a skinny boy to begin with. "I
was very concerned about that," Laura recalls. "You can tell a child to eat, but
you can't make them eat." "But," she says with a shrug, "it did help
with his behavior." Sam no longer seemed compelled to pester his neighbors in class.
He could walk from room to room without climbing the walls or rattling a pen along the
lockers.
But the tiny blue 5-milligram pill he takes at breakfast wears off by 2
p.m., and from that point Sam's teachers and parents use their wits and wisdom to keep Sam
on track. One evening a week, Sam attends a group therapy session with other children with
ADHD who need help learning how to act appropriately in social settings. He says he
doesn't like it, but he clearly tunes in -- you can tell by his recall of some details.
"If you see two people having a conversation there are six things you do," he
recites. "First, you stand near them. Then you move closer, and smile. Then you see
if they smile back. If they do, then you smile again. Then if you know something about
what they're talking about, you join in the conversation, but maybe just a small comment
at first." Laura doesn't give Sam the medication on weekends or evenings, mainly
because she worries about his weight. Too, she doesn't want him to be on medication
forever. "Our goal is eventually to get him off," she says. "From what I've
read, a lot of boys, once they go through puberty can . . . not outgrow it exactly, but
the hyperactivity can be less. "In the meantime I want him to learn how to
cope." For now coping begins with the pills, which clearly have an effect. Sam forgot
to take his medication the first day back at school after winter break this year -- and
the teacher noticed right away. He couldn't sit still and his attention wandered. Which
got Laura thinking again about the dosage. "I've been kind of waiting to see if
there's a need to increase it," she says.
Before Thornton Friends' two-week winter break, Jonathan Meisel had
written up a contract for Andrew. It was a one-page list of do's and don'ts, and it
essentially stipulated that if Andrew's behavior didn't improve, he was out of the school.
One thing the contract required was more frequent therapy, and so Andrew began seeing
Breggin weekly, instead of every few months. But the new system also made a concession:
Instead of writing by hand, which was torture for Andrew as it is for many ADHD kids, he
was allowed to bring a laptop to school so he could type his notes. All in all, it was a
challenge.
The family drove to South Carolina to visit Bruce's parents for part of
the school vacation. The trip went smoothly. One evening, back in town but before he
returned to school, Andrew joined his father and a family friend in a sort of woodshed
behind the friend's house. While the adults drank cognac and smoked cigars, they talked
with Andrew about his future. "You could just tell how excited he was to be treated
as an adult," Bruce says, "and at the end my friend said, 'This is a good kid.
He doesn't need to be in special education.' "
Recently, Andrew has begun to feel he has a goal in life. He downloads
music from the Internet and burns CDs for his friends, earning a little money that way.
He's been thinking he'd like to take a mail-order computer course. "That's what I'd
like to do when I'm older," he says, "become a computer programmer." In
written evaluations submitted at the end of the third week of the new trimester, all of
Andrew's teachers had noted a remarkable turnaround. "Andrew has developed some
qualities in the science classroom since holiday break that I have not usually seen,"
one teacher wrote, " -- improved attentiveness to discussion and explanation, more
thoughtful questioning and answering, and decreased distractions with other
students." Randy Mackiewicz, Andrew's foreign language teacher, went further.
"We're proud of Andrew's progress," he wrote. His parents are keeping their
fingers crossed. "It took a lot of people -- his teachers and friends and therapists
and family and him -- to get this far," Wendy says. "We feel like he's turned a
corner." |