We all hear that the sooner we get a diagnosis and early intervention the more we will be able to minimize the impact of Autism on our kids. When I first began hearing this, I felt that so many of us were between a rock and a hard space because the hope was there but the knowledge our professionals and communities needed to help our kids get the early diagnosis was not. I worked with the CDC distributing information for their "Learn The Signs, Act Early" program and through Special Needs Network distributing developmental guidelines to families. However we were all working on a grass roots level as most professionals and institutions were just catching on and research data was limited. I know things are getting better as major grants for research have been distributed and organizations like Autism Speaks are aggressively funding research. Today I came across an article that shows how Yale is using new technology to help detect autism earlier. I know this won't impact my son (who was diagnosed at 2) but it is going to help other kids, and who knows maybe even my grandkids! So, it's encouraging and lord knows encouragement, any encouragement is good. It's a good read. Enjoy
New Ways to Diagnose Autism Earlier
Gains in Language And IQ; Predicting Risk
With Eye-Movement Sensors
July 8, 2008; Page D1
With the number of autistic children growing, researchers are targeting new technologies to help detect the disorder at ever-younger ages in hopes of reversing some of autism's worst symptoms.
Most autistic children currently aren't diagnosed until they are about 4 years old, using conventional detection methods of observing behavior. Although specialists are able to identify the condition starting at about 30 months, most parents don't seek evaluations that early because they don't notice anything unusual about their children, or don't know what symptoms to look for. Now, scientists are using new techniques to study children as young as a few months old for signs of possible autism and to flag them for more extensive analysis.
By identifying children early who may be at risk of developing autism, even without a definitive diagnosis, parents can consider initiating behavioral therapy, the most widely validated treatment for the condition. Studies of autistic children indicate that preschool-age kids receiving intensive treatment show greater gains in language and IQ scores than children whose treatment begins at older ages. Behavioral therapy includes such measures as encouraging children to look at people's faces, express emotions and curtail any repetitive tics. But diagnosis and therapy can be expensive, and insurance coverage for autism treatment is spotty, especially for early intervention.
Researchers at Canada's McMaster University recently announced that they had developed a computerized test using eye-movement sensors that aims to predict the risk of autism in children as young as 9 months. The system, which administers five eye-tracking tests over 10 minutes, measures the direction and fixation of a child's eyes when confronted with computerized images, including human faces.
Yale University's Toddler Developmental Disabilities Clinic is using similar eye-tracking technology to study patterns in gaze behavior in children ages 3 months to 3 years. And researchers at the Massachusetts Institute of Technology's Media Lab are developing specialized software and an in-home recording device to analyze the habits of newborns in hopes of teasing out the most subtle signs of early autism.
"Children with autism in general have difficulty extracting affective information from faces, and also difficulty in recognizing faces," says Katarzyna Chawarska, director of the Yale clinic. By tracking eye movements, "we can begin to understand what interests them, how they examine objects they select for processing, and what motivates them intrinsically," she says.
The Yale clinic has been monitoring 17-month-old Caleb Scott from birth. The fact that Caleb's older brother is autistic raises the odds that Caleb could also develop the disorder. After conducting more standard autism evaluations, Dr. Chawarska's team tracks Caleb's eyes as he looks at clips from "Sesame Street" and images of different faces. The perceptual patterns are encouraging, says Caleb's mother, Katie Scott, of Naugatuck, Conn. "I see him watching the eyes and the mouth, I see him looking at the right-side-up face instead of the upside-down one. All of that gave me hope right away."
But eye-tracking won't pick out all children with autism. That's because the disorder can manifest itself in a variety of ways at different ages, such as a child not responding when called or failing to exhibit normal body gestures. Some children also won't cooperate with the eye-tracking equipment.
Autism specialists say the new technologies can provide useful clues in assessing the disorder, but a proper diagnosis requires human observation to consider a range of possible symptoms. "There is something about a clinician that adds to the predictive value," says Catherine E. Lord, director of the University of Michigan Autism and Communication Disorders Center. In the 1980s, Dr. Lord led the team that developed the Autism Diagnostic Observation Schedule, which has become the standard assessment for autism.
In traditional autism screening, clinicians observe children as they complete a set of human- and object-oriented tasks. Typical symptoms include aversion to normal social interaction, delays in language development, repetitive actions and sometimes self-abuse. There is no known medical cure.
While most experts agree that there is a biological, and perhaps heritable, basis to autism, no available genetic or blood test can diagnose it. The high-tech researchers say that their tools are not meant to replace traditional diagnoses, but rather to complement them by screening children earlier and recommending probable cases for more-comprehensive assessments.
"By providing very intensive early intervention, we can significantly reduce the symptoms of autism," says Geraldine Dawson, chief science officer of advocacy group Autism Speaks. But "there is huge variation in how children respond to early intervention."
Autism spectrum disorders, including Asperger's syndrome, affect about 560,000 Americans under 21, according to the Centers for Disease Control and Prevention. The disorder is found in one out of every 150 children by the time they are 8 years old, more than 10 times the reported rate in the 1980s, the CDC says. Autism experts are divided whether the rising number of cases is due to an actual higher occurrence, a loosening of diagnostic standards or greater screening frequency.
Recently, some advocacy groups, such as the Autistic Self-Advocacy Network, have spoken out against a search for a cure -- arguing instead that others should accept autistic people as they are. "We are very supportive of early diagnosis and early education," says Ari Ne'eman, the group's president. "We shouldn't be trying to force normalcy on autistic children, but rather help children acquire skills, communication, and quality of life," he says.
|Annie Shic/Yale University|
|A toddler participates in an experiment designed to study the preference for direct gaze, the common response in healthy children.|
Researchers say McMaster University's study to assess risk of autism was the first to find statistically significant differences in children at such a young age. The study (at earlyautismstudy.org) conducted eye-tracking tests on 43 children. Of these, 13 children had siblings with autism, which increases the risk of having the disorder eightfold. The children were shown a series of images and were scored based on their responses; for instance, did a child spend more time looking at a person's eyes or mouth? The group of 13 children at elevated risk showed a significantly lower responsiveness score than did the other group with no known risk.
The study was led by Mel D. Rutherford, director of early autism study at McMaster. She says the initial findings, presented at the International Meeting for Autism Research in London in May, only compare patterns between the two groups of children. But Dr. Rutherford expects that after refining the tools, her lab "will be able to construct a predictor score for each individual infant."
Debbie Page says early action helped her son Gabe, who had a limited vocabulary and was diagnosed with autism at 30 months. Gabe spent six months last year participating in an early-intervention study at the Kennedy Krieger Institute Center for Autism and Related Disorders in the Page's home town of Baltimore.
After 250 hours of intensive behavior therapy, which was free for the Pages because it was part of a study, Ms. Page says Gabe was speaking in three- and four-word sentences. He became more socially engaged and shed several tics, including humming nervously. This year, Gabe will enter a mainstream kindergarten, his mother says. "He came out like a songbird," she says.
Researchers at MIT's Media Lab, who are developing software to analyze videos of autistic children, are collaborating with the Groden Center, a Providence, R.I., school and treatment center for autistic kids. The program, led by Deb Roy, director of the Cognitive Machines Group at the Media Lab, hopes to begin short trial runs in 10 homes by the end of the year. Dr. Roy says that by analyzing common behavioral patterns, he hopes to create a predictive tool for children at risk. He also says the video analysis can help families track progress of a child in therapy.
While early intervention for autism can increase the financial burden on parents, it could potentially reduce costs in the long run if therapy succeeds in reducing an autistic child's symptoms. The average yearly health-care expenditures for a child with autism or a related disorder were nearly $6,000 in 2004, according to a study by Yale University researchers released last year. Specialized private schools for autistic children can cost about $60,000 a year.
Ms. Scott, in Connecticut, says she paid $5,000 to have her first child, John Jules, diagnosed for autism, but Caleb's visits to the Yale study are free. She says insurance helped pay for speech and eating therapy and a Connecticut program for children with developmental disorders provides nearly-free specialist visits for additional treatment. But Ms. Scott says her family can't afford to send the kids to a specialized private school for autistic children.
Just eight states have passed bills mandating coverage by private insurers for autism and related disorders, including a Pennsylvania bill that awaits the governor's signature. (For a list of states, go to autismvotes.org and click the State Initiatives tab.) Currently, 27 additional states are working on autism initiatives, says Elizabeth Emken, vice president of government relations for Autism Speaks.
Write to Jeremy Singer-Vine at firstname.lastname@example.org