Sunday, June 15, 2008

Looking Inside Kids' Minds Can Open the Future

Doctor Uses Brain Imaging to Diagnose and Treat Kids' Cognitive Disorders
By CLAIRE SHIPMAN and ARIANE NALTY
May 20, 2008

Two million American children have been diagnosed with attention deficit hyperactivity disorder, according to the National Institute of Mental Health. It's so common now that one child in a classroom of 25 or 30 will have the disorder. But parents often struggle a long time to figure out exactly what's going on in their child's head. Is he tired? Is she confused? Is he just acting up? Does she need help?

Dr. Fernando Miranda, a neurologist at the Bright Minds Institute in San Francisco, says diagnosing children with behavioral disorders like ADHD and autism without looking at their brains is like trying to diagnose heart problems without actually looking at the heart. Click here to read a story about Miranda's autism research.

On the other hand, some of Miranda's patients have found they had an attention deficit problem and didn't even know it. Miranda, and many other doctors, believe more objective tools for figuring out these puzzles are critical.

From an early age, 9-year-old Danny Rodgers had trouble speaking.

Danny's words were in his head; they just couldn't seem to find a way out. Embarrassed, he avoided talking altogether and stopped trying to make friends.

Danny's grandparents, Jeanne and Howard Rodgers, who have been raising him and his sister, Meghan, since their mother died, said the school system recommended speech therapy, and patience.

"They kept saying, 'He'll grow out of it. He'll grow out of it '," said Jeanne Rodgers.

But he never did .

"He'd cry a lot and say, 'I don't' like my life. I don't like what I'm doing. I don't want to go to school,'" said Danny's grandmother.

They went to see Miranda at the Bright Minds Institute, and Miranda took a different approach to treating Danny.

Danny was wired for a qunatitative electroencephalography, or EEG, a very sophisticated test that measures a brain's electrical output in response to certain stimuli. He also underwent a comprehensive neuropsychological exam, and magnetic resonance imaging of the brain.

Those tests revealed a lot of surprises.

"This child's IQ was 138," Miranda said. "And that's huge. That's so bright."

One EEG measurement, called a P300, showed normal and abnormal electrical impulses in Danny's brain with a series of bright colors.

Reading the scan, Miranda said Danny was not "perceiving" speech in the superior temporal gyrus.

Translation: Danny has what's known as an auditory processing issue. It wasn't so much that he was having trouble speaking or pronouncing things -- his brain wasn't understanding speech correctly.

Danny's problem was not a standard speech issue at all, and his years of conventional therapy were off target.

Miranda pointed out a group of squiggly lines on the scan, showing Danny was likely to have an attention problem.

In a normal EEG, those squiggly lines would not be there in the frontal lobe section of this recording. Using those tests and other physical and behavioral information, Miranda diagnosed Danny with ADHD.

"The areas of the brain that are involved in attention deficits are many, and unless you know which one specifically is the one that you're addressing, that is not functioning very well, you cannot prescribe the right medication for it," Miranda said.

For Danny, that meant the puzzle was solved in ways his grandparents never would have guessed.

"He wasn't a hyper child at all," Jeanne Rodgers said

Now on ADHD medication and specific therapy for his decoding problem, Danny has a lot to say.

"I didn't like learning. I thought it was boring ," Danny admitted in Miranda's office.

But now "it's kind of fun," he said.

"He got nine out of 10 'outstandings' on his report card! " his grandmother marveled.

Danny's unhappiness used to tear up his grandparents. Jeanne Rodgers and her husband, Howard, are spending all they can on his special therapy, and have also spent a bundle on the tests with Miranda, almost none of which were covered by insurance. But both of them said the costs have been well worth it.

Still, some leading doctors say it's too soon to use sophisticated tests like these clinically, and that people might be wasting their money on them.

Dr. Bradley Peterson, director of the Pediatric Neuropsychiatry Research program at Columbia College of Physicians and Surgeons, said the technology is not there yet.

"No test can tell you that this child has ADHD and that one doesn't," Peterson said. "At least at present day. Hopefully, in the next year or coming years, we might have that, but we don't yet."

Others who work with the technology routinely, such as Dr. Sandlan Lowe, a professor in the departments of psychiatry, physiology and neuroscience at New York University School of Medicine, said it can help in reaching a diagnosis.

"In Europe, for instance, EEG and quantitative EEG is routinely done," Lowe said. "In this country, I think there are a lot of neurologists who have the idea that it's just not that helpful. And I have to tell you that in the right hands, it's a very useful tool."

So why isn't it used more often? A number of doctors said reading the MRIs and EEGs is complicated, and not every neurologist is properly trained to read them. The tests are also expensive, and are often not covered by insurance.

Many scam artists have also claimed they could read these brain imaging tests when they could not, bilking people out of thousands of dollars.

But Miranda, as well as many patients, believe they are on the cutting edge of a new frontier in diagnosing and treating children's cognitive problems.

Jan Jensen, a nurse whose husband is a surgeon, worried about the attention problems she sawin her three children. But she wasn't happy that her family practictioner suggested prescribing Ritalin without doing any tests.

Lindsey, 12, always seemed restless and unfocused, Jensen said. Meagan, 8, was having significant trouble reading. But Jensen was especially worried about 9-year-old Zach.

"He's like the energizer bunny on crack. I'm telling you, this kid is constantly going," she said, adding he has almost no fear and little ability to understand the consequences of his actions.

All three had MRIs and quantitative EEGs, in addition to neuropsych workups. Lindsey's results weren't a surprise; she showed clear signs of attention deficit problems, Miranda said. But he recommended a different medication than Ritalin.

But the other children's data yielded some surprises. Zach's tests showed signs of ADHD but also structural problems in his brain.

"He has an area of lack of development of the hypocampus here. This is a finding that explains some of the problems that he does have sometimes remembering or paying attention," Miranda said.

That information led Miranda to suggest not only medication but targeted therapy, in this case music lessons, to help teach the other side of Zach's brain to pick up the slack.

Miranda contends specialized memory excercises that appeal to one particular side of the brain can train it to take over for the slower side.

Megan showed no signs of attention deficits or other brain issues.Miranda suggested simply helping her with her reading. Without this puzzle piece Megan would likely have been put on medication. Mom had assumed that Meagan, the youngest, likely had the same issue as her siblings.

Controversial New Movement: Autistic and Proud

Activists Say Stop Looking for a Cure and Accept Autistic People as They Are
By DEBORAH ROBERTS, MICHELLE MAJOR and JONANN BRADY
June 10, 2008

Ari Ne'eman and Kristina Chew say they are the faces and voices of autism's future.

They're part of a controversial group hoping to radically change the way others look at autism. Their message: Stop the search for a cure and begin celebrating autistic people for their differences. It's a message that has some parents of autistic children bewildered and angry.

Ne'eman, 20, is the founder of the Autistic Self Advocacy Network, a non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals.

"We believe that the autism spectrum and those on it, are important and necessary parts of the wide diversity present in human genetics," Ne-eman says on the ASAN Web site.

Ne'eman was diagnosed with Asperger's syndrome, a less severe form of autism, as a child.

"I think the others around me knew I was different from as early as I can remember," he told "Good Morning America."

When Ne'eman says that looking for a cure for autism is the wrong approach to take, he understands why some parents are upset -- especially those with very low-functioning, non-communicative autistic children.

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

'Ransom' Ad Sparks Action

Kristina Chew, a professor at St. Peter's College in New Jersey, is one of the growing number of parents involved the movement.

When her son, Charlie, was diagnosed with severe autism, Chew said, "I was completely in a gulf. I didn't believe it for months."

Chew now believes that autism treatments and so-called cures are a waste of time. She said she'd rather see Charlie, now 11, benefit from better support services and education.

"My son is who he is. He's not going to change; he's always going to be Charlie. And at the same time, I loved him just for what he was," Chew said.

Parents like Chew and autistic adults like Ne'eman joined forces several months ago, after seeing an edgy new campaign to fight autism from the New York University Child Study Center that implied children with autism are held hostage by the disorder.

The NYU Child Study Center says the ads were about creating awareness, but Ne'eman says that instead, the ads reinforce prejudices about people with autism.

"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.

Ne'eman and his supporters protested so loudly, that the ads were cancelled three weeks after they were released.

Wouldn't Change Diagnosis

Many parents of autistic children say that Ne'eman and his group's views don't reflect their reality and should essentially be ignored.

Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."

Ne'eman believes history is on his side.

"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.

And the young activist says if he could go back and change his Asperger's diagnosis, he wouldn't.

"If there was a magic pill that would make me neurologically typical, normal, I wouldn't take it," Ne'eman said.

But a number of experts say his path might not be the answer for many others dealing with autism.

Friday, June 6, 2008

New test to spot autism at 9 months of age on the horizon

Washington, May 21 : An early diagnostic test for autism is on the horizon, thanks to researchers at McMaster University, who are developing a new test for detecting autism as early as nine months of age.

The Early Autism Study, led by Mel Rutherford, associate professor of psychology in the Faculty of Science, has been using eye tracker technology that measures eye direction while the babies look at faces, eyes, and bouncing balls on a computer screen.

"What's important about this study is that now we can distinguish between a group of siblings with autism from a group with no autism - at nine months and 12 months," said Rutherford.

"I can do this in 10 minutes, and it is objective, meaning that the only measure is eye direction; it's not influenced by a clinician's report or by intuition.

Nobody's been able to distinguish between these groups at so early an age," she added.

Currently, the earliest diagnostic test for autism is reliable around the age of two, and most children in Ontario are diagnosed around age three or four.

The earlier the diagnosis the better the overall prognosis, said Rutherford.

"There is an urgent need for a quick, reliable and objective screening tool to aid in diagnosing autism much earlier than is presently possible," she said.

"Developing a tool for the early detection of autism would have profound effects on people with autism, their parents, family members, and future generations of those at risk of developing autism," she added.

Rutherford presented her peer-reviewed research at the 7th Annual International Meeting for Autism Research in London.

Autism program helps parents, officials and children to deal with emergency situations

By AARON SANBORN
asanborn@fosters.com
Article Date: Friday, June 6, 2008

DOVER — It's a scenario that every parent of child with autism dreads.

Suddenly you're involved in some sort of accident, and your child is alone and confused and could be easily startled by the presence of emergency personnel.

It's a scenario that many in the community with autistic children are beginning to prepare for.

Six area families, including four from Dover, signed up for the Easter Seals Autism Awareness 911 program during an open house last Thursday night outside of the McConnell Center. The program allows for parents to fill out a profile of their child, which is then forwarded to the city or local dispatch centers so those homes with autistic children can be flagged for police, fire and emergency personnel.

Information also is forwarded to New Hampshire 911 to flag the phone number.

During Thursday's event, several autistic children had a chance to interact with firefighters and police officers, along with some of their equipment and apparatus.

Dover resident Marie Berman said the event was the perfect opportunity to familiarize her 6-year-old daughter with firefighters and their equipment.

"It's good for her to learn that if she is in danger, these are the people that can help," Berman said.

Berman's daughter has sensory issues and gets scared by loud noises and crowded places. Berman said it's good for her to be around the fire trucks and police cars, so she could hear the sirens.

"It helps her to not be afraid," Berman said.

Elizabeth Webster, who founded the program with her partner Dawn Brady, said the two have worked with police in Manchester and Concord. They hope to spread the program throughout the state.

The next autism event is scheduled for Saturday, Sept. 13 from 3:30 p.m. to 5:30 p.m. at the McConnell Center.