The Answers to Autism May Be Inside the Mind
Dr. Fernando Miranda Says Neurologists Should Be More
Involved in Autism Fight
By CLAIRE SHIPMAN and ARIANE NALTY
May 19, 2008
On the front lines of autism treatment, things can get
emotional, controversial and -- sometimes -- hopeful.
Doctor pushes for brain scans to be used to diagnose
children with disorder.
One doctor in California is arguing that trying to diagnose
autism without looking at the brain is like trying to diagnose a
heart condition without looking at the heart, though the
established autism community isn't so sure.
But for parents like Sarah Kavanagh, Dr. Fernando Miranda has
changed their lives.
To be sure, Kavanagh would have had her hands full anyway.
For the single mother of twin 6-year-old boys, Beckett and Webb,
the days start early.
"Come on guys, let's have some breakfast," she
shouts.
Beckett and his brother, Webb, come bounding out of bed
smiling. It takes quite a while to get these two youngsters to
arise from their slumber. But once they are up, the twins are
ready for the day.
Beckett immediately runs to his dog, Wilson, an old English
sheep dog, while mom prepares their morning meal.
"Breakfast," yells Beckett, loud and clear.
For the last five years, Kavanagh has been struggling to get
him to this point and it's still hard for her to think back on
the heartbreaking diagnosis she got when Beckett was 18 months
old.
"They just watched him play in a room with a little
kitchenette set and some stuffed animals and from that they
deemed that he would be autistic," she said, shaking her
head. "I was shocked, devastated."
Beckett always struggled with his speech, unlike his twin
brother, Webb. More and more specialists gave her grim news
about his condition.
"I heard everything from a resident telling me he would
never advance beyond the intellect of an 18-month-old to the
school district telling me he'd have to have a companion for the
rest of his life," Kavanagh said.
Searching for a New Frontier
But there was something -- his eye contact, his eagerness to
relate or maybe it was just a mother's instinct -- that told her
otherwise.
And her lawyer's instinct. Kavanagh's legally trained mind
allowed her to think outside the box.
The lawyer's thorough searching led her to a doctor who was
taking parents' demands for answers to a new frontier.
Miranda, who runs the Bright
Minds Institute in San Francisco, insists that you
have to look inside the brain to determine what's wrong.
"You have a child that comes to me and mom says, 'Why is
my child not talking?'" he said. "We know that speech
is in the brain. What's going on in his brain? I think we should
answer that and I think we should answer that as objectively as
possible."
But that is not the typical method of diagnosing autism.
Behavioral tests are the standard. Indeed, neurologists are
often only brought in when cases seem unusual. Even then,
high-powered MRIs and cutting-edge EEGs are only used
selectively.
Miranda said that's because neurologists have not been as
fully involved in the field of autism as they should have been.
He thinks that should change.
After looking at Beckett's MRI, Miranda explained that the
corpus callosum, the brain freeway that connects the two
hemispheres, was a bit thin. That is crucial in any sort of
diagnosis because it can affect language.
But this is the critical point: knowing that now will direct
the sort of therapy Miranda suggests for Beckett.
Miranda said that in a few years if another MRI is done, it
should show a difference in his brain.
Justin Senigar, left, was diagnosed with autism but his
parents later found out he had a seizure disorder.
But even more important, Miranda found something amiss on his
EEG, which he said is an indication Beckett could be having
seizures that are impossible to see physically.
After more tests were done, including a sleep EEG, it was
determined that Beckett almost certainly isn't autistic, Miranda
said. He has a version of Landau Kleffner syndrome, a rare brain
seizure disorder that can masquerade as autism.
Miranda put Beckett on anti-seizure medicine and the results
have been astounding.
"Within a period of 60 days his vocabulary went from
maybe two or three words to about 300 words," Miranda said.
Seizure Medication Made a Difference
To watch Beckett today, you might think he has a bit of
trouble speaking, but it's minor. You'd never think he was
autistic. He's being mainstreamed in kindergarten, in a school
that he attends with his brother.
But that is yet another thing Kavanagh has had to fight for,
because the autism label stuck for so long it was hard to
remove.
She's also had to battle conventional wisdom in the medical
community. Despite the EEG results, other doctors she'd seen in
the past told her Beckett's seizures didn't meet the standard
criteria for treatment. He wasn't having enough seizures, in
other words.
Typically with anti-seizure medicine, the course of treatment
is no more than four years. In that amount of time, the seizures
usually clear up as the brain is literally retrained to stop
seizing.
Many types of anti-seizure medicine are in use for other
symptoms, such as bipolar disorder. But there is great debate
within the autism medical community about when anti-seizure
drugs should be used and about how severe the seizures have to
be before they are treated.
Further complicating things, these seizures can often be
completely invisible to the naked eye, or mistaken for staring
or daydreaming -- symptoms typical of autism.
That was the problem for 8-year-old Justin Senigar. When he
was 18 months old, his parents, concerned about his lack of
speech, took him to a doctor. They were told he was on the
"spectrum" and to focus on speech therapy.
The Senigars never quite believed it. His eyes told them
something else. He would close his eyelids for moments at a
time. It looked almost as if he was dreaming.
They searched for answers year after year, even taking him to
a revered neurologist when he was 4 years old.
"They didn't run tests, they didn't do anything,"
Justin's mother, Paula Senigar, said.
Until the Senigars found Miranda when Justin was 7, all the
response they could get from him was one-word answers or just
nods or shakes of his head.
After running tests on Justin and finding from his EEG that
there seemed to be fairly significant seizure activity, Miranda
prescribed anti-seizure medicine, which made a difference for
him immediately.
"Within the first couple of weeks," Todd Senigar
said. "We started to see that he was able to maintain focus
on … schoolwork.
"We noticed that his language was developing and he was
able to be more expressive. And it was exciting for us,"
Paula added.
The Senigars will never be able to get back the years before
Justin was diagnosed. They watch old home videos, remember
specific instances when Justin seemed a little off and wish they
could have found out something sooner.
They recall instances when Justin didn't seem in the moment,
when they thought perhaps he may have just "spaced
out" at the time. But those moments were not just their
child zoning out. They were seizures.
Some research shows that children with autism are prone to
seizures and that 50 percent of children diagnosed as autistic
would have abnormal EEGs if tested.
But again, there is great debate over whether and when to
treat. And the problem is compounded by the fact that the
seizures might go unrecognized by the untrained eye. Without the
tests, even significant seizures can be missed.
Many top neurologists caution that these tests would by no
means make sense for every child with autistic symptoms.
Many experts say there may not be the equipment or expertise
to do it. And top neurologists say there is no clear research on
how many children this would really help.
"Doing an EEG and MRI in every child with autism is
absolutely not recommended," said Dr. Robert Tuchman,
director of the Autism Program at Miami Children's Hospital.
Tuchman and others said there would have to be a sign of
something else, maybe the staring or some other symptom that
might lead a doctor to believe there is more going on. And it is
possible that specialists have more experience in judging who
might be best helped by these tests that "look at the
brain."
But, what about the other kids? Wouldn't they be helped by a
more scientific way to look for abnormal brain activity? Most
experts said it was not practical. There are not enough
facilities and doctors who can perform these specialized tests
to handle the volume.
Further, it's not clear how many children would be helped.
Again, there is debate about whether a small amount of
"abnormal brain activity," or spikes or an EEG, should
mean treatment with anti-seizure drugs. The Kennedy Kreiger
Institute in Baltimore, on the front lines of autism treatment
and research, says it worries that EEGS for everyone would yield
too many "abnormal" EEGs and that too many kids would
wind up on anti-seizure medication for no reason.
At the heart of the matter: There is simply no research yet
to show exactly which kids with seizurelike activity might
really be helped. What the level of this seizurelike activity
needs to be for drugs to make a difference, nobody knows.
The question is literally being studied now, in the field.
Miranda believes that there is no harm in trying patients out on
the drugs to find out, in a very controlled fashion. Many
people, he says, do not benefit. But he does not view the drugs
as harmful. Other doctors clearly disagree.
How to Get More Information
Rodgers family: Jeanne, Howard, Danny & Meghan
(Courtesy Rodgers Family )
One top researcher working on this subject, who admitted it's
fairly controversial, says the established medical community
always has a hard time with change. He predicts that this method
of diagnosis will eventually have to become standard.
And many neurologists have said that there are a number of
reasons a parent might want to have an MRI or EEG:
If your child has had any regression
If they seemed to be developing normally, but then that stopped
If they have staring spells, or daydreaming spells, where they
seem to "disconnect" for a time
That combined with good eye contact and good social skills could
mean seizure activity, but only sometimes
Miranda's Web site has more specific information on what to
look for and treatment options.
Click
here to visit www.brightmindsinstitute.com
Miranda was asked about the fact that so many doctors might
say, "Yes, this technology is great, but we don't know
enough about what we're seeing to recommend that this be the
norm."
Miranda said it's time that more neurologists learn to look
for problems in kids' brains.
"We neurologists are experts in the brain," he
replied. "The brain is the integral part of our body for
behavior. So we need to look at that in detail in our children.
If not, we're not doing anyone a favor."
In the end, parental instinct is key. Paula and Todd Senigar
are thankful they never gave up their search, but are plagued by
video they have of Justin at age 2. What they thought was
daydreaming was almost certainly seizures. And they are angry
and confused that the top neurologist Justin saw when he was 4
never did any tests. These physicians never even suggested to
them that this could be in fact, seizures.
"I feel like we lost out on a lot of time and
development for him," Todd said.
"That's the one thing we can't get back no matter
what," Paula said. " We can't get those years back to
try to."
At that point Paula started crying, and asked to take a
break.
But half an hour later, as Justin prepared for his karate
class, his favorite activity, she brightened.
Later, watching him in the studio with Todd, they realized
that moments like these, with Justin calmly doing his moves and
talking to the class, would have been unthinkable just a few
years ago. Justin now participates in the same afterschool
activity as his older sister, Jordan.
In fact, he was even called on to recite the school creed.
"Amongst my brothers and sisters," he started,
"I profess to live my life in a positive manner, to respect
my self." He got through every word like that of any
8-year-old.
Paula is convinced that Justin will grow up to be an artist
-- a talented one at that. He enjoys drawing his favorite pizza
restaurant. And most importantly, he paints a portrait of his
family -- one that has gone through so much, but sees a brighter
and more colorful picture for the future.
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