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Tuesday, November 19, 2013 Reader Supported.
Autism Signs 'Present In First Months' Of Life
By Helen Briggs BBC News
An early indication of autism can be identified in babies under six months old, a study suggests.
US researchers, writing in Nature, analysed how infants looked at faces from birth to the age of three.
They found children later diagnosed with autism initially developed normally but showed diminished eye contact - a hallmark of autism - between two and six months of age.
A UK expert said the findings raise hope for early interventions.
In the study, researchers led by Emory University School of Medicine in Atlanta used eye-tracking technology to measure the way babies looked at and responded to social clues.
Continue reading the main story “Start Quote These early markers are extremely important for us to identify - the earlier we can diagnose a child who has one of these disorders - such as autism - the earlier we can provide intervention and development"
Dr Deborah Riby Durham University They found infants later diagnosed with autism had shown a steady decline in attention to the eyes of other people from the age of two months onwards, when watching videos of natural human interactions.
Lead researcher Dr Warren Jones told BBC News: "It tells us for the first time that it's possible to detect some signs of autism in the first months of life.
"These are the earliest signs of autism that we've ever observed."
The study, in collaboration with the Marcus Autism Center and Children's Healthcare of Atlanta, followed 59 infants who had a high risk of autism because they had siblings with the life-long condition, and 51 infants at low risk.
Dr Jones and colleague Dr Ami Klin followed them to the age of three, when the children were formally assessed for autism.
Thirteen of the children were diagnosed with autism spectrum disorders - a range of disorders that includes autism and Asperger's syndrome - 11 boys and two girls.
The researchers then went back to look at the eye-tracking data, and what they found was surprising.
"In infants with autism, eye contact is declining already in the first six months of life," said Dr Jones.
But he added this could be seen only with sophisticated technology and would not be visible to parents.
"It's not something that parents would be able to see by themselves at all. If parents have concerns they should talk to their paediatrician."
Dr Deborah Riby, of the department of psychology at Durham University, said the study provided an insight into the timing of atypical social attention in children who might go on to develop autism.
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Autism Linked to Digestive Problems
By Traci Pedersen Associate News Editor Reviewed by John M. Grohol, Psy.D. psychcentral.com
Children with autism are six to eight times more likely to suffer gastrointestinal problems than typically developing children, according to new research from the University of California-Davis’ MIND Institute.
“After years of parents raising concerns about such symptoms, the huge differences we see between parental reports on children with autism spectrum disorder versus those on children with typical development puts to rest the idea that gastrointestinal problems among children with autism spectrum disorder are just an accumulation of case reports,” said Irva Hertz-Picciotto, principal investigator for the CHARGE Study and a researcher affiliated with the MIND Institute.
“Our data clearly show that gastrointestinal problems are very common in children with autism."
The study is the largest and most ethnically diverse research to compare digestive problems in autistic children with developmental delay and typical development. It is also the first to investigate the link between stomach upsets and behavior problems.
“Parents of children with autism have long said that their kids endure more GI problems, but little has been known about the true prevalence of these complications or their underlying causes,” said lead author Virginia Chaldez, Ph.D.
Researchers, however, are still unsure which problem comes first.
“The GI problems they experience may be bidirectional. GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems. One way to try to tease this out would be to begin investigating the effects of various treatments and their effects on both GI symptoms and problem behaviors,” said Chaldez.
For the study, the parents of nearly 1,000 children (between the ages of 24 and 60 months)who were enrolled in the Childhood Autism Risks from Genetics and the Environment (CHARGE) study in North Carolina filled out two questionnaires.
The first questionnaire detailed GI health history (GIH) and covered stomach pain, diarrhea, constipation and problems with swallowing. The next questionnaire was a behavior checklist (ABC). It detailed occurrences of irritability, social withdrawal/lethargy, repetitive behavior, hyperactivity and inappropriate speech.
Approximately half of the study population was white, with one-third Hispanic and the remainder from other ethnic or racial backgrounds.
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• • •
Gut Bacteria Might Guide The Workings Of Our Minds
By Rob Stein npr.org
Illustration by Benjamin Arthur for NPR
Could the microbes that inhabit our guts help explain that old idea of "gut feelings?" There's growing evidence that gut bacteria really might influence our minds.
"I'm always by profession a skeptic," says Dr. Emeran Mayer, a professor of medicine and psychiatry at the University of California, Los Angeles. "But I do believe that our gut microbes affect what goes on in our brains."
Mayer thinks the bacteria in our digestive systems may help mold brain structure as we're growing up, and possibly influence our moods, behavior and feelings when we're adults. "It opens up a completely new way of looking at brain function and health and disease," he says.
So Mayer is working on just that, doing MRI scans to look at the brains of thousands of volunteers and then comparing brain structure to the types of bacteria in their guts. He thinks he already has the first clues of a connection, from an analysis of about 60 volunteers.
Mayer found that the connections between brain regions differed depending on which species of bacteria dominated a person's gut. That suggests that the specific mix of microbes in our guts might help determine what kinds of brains we have — how our brain circuits develop and how they're wired.
Of course, this doesn't mean that the microbes are causing changes in brain structure, or in behavior.
But other researchers have been trying to figure out a possible connection by looking at gut microbes in mice. There they've found changes in both brain chemistry and behavior. One experiment involved replacing the gut bacteria of anxious mice with bacteria from fearless mice.
"The mice became less anxious, more gregarious," says Stephen Collins of McMaster University in Hamilton, Ontario, who led a team that conducted the research.
It worked the other way around, too — bold mice became timid when they got the microbes of anxious ones. And aggressive mice calmed down when the scientists altered their microbes by changing their diet, feeding them probiotics or dosing them with antibiotics.
To find out what might be causing the behavior changes, Collins and his colleagues then measured brain chemistry in mice. They found changes in a part of the brain involved in emotion and mood, including increases in a chemical called brain-derived neurotrophic factor, which plays a role in learning and memory.
Scientists also have been working on a really obvious question — how the gut microbes could talk to the brain.
A big nerve known as the vagus nerve, which runs all the way from the brain to the abdomen, was a prime suspect. And when researchers in Ireland cut the vagus nerve in mice, they no longer saw the brain respond to changes in the gut.
"The vagus nerve is the highway of communication between what's going on in the gut and what's going on in the brain," says John Cryan of the University College Cork in Ireland, who has collaborated with Collins.
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• • •
Media-Free Bedroom Especially Important in Kids With Autism
By Megan Brooks medscape.com
Having a television or computer in the bedroom is more disruptive to sleep in boys with an autism spectrum disorder (ASD) than it is with typically developing boys or those with attention- deficit/hyperactivity disorder (ADHD), new research suggests.
"Previous research has shown that in-room access to media, such as a television or computer, is associated with less sleep among typically developing people. Our findings suggest that the relationship between these 2 variables is larger in boys with autism than typically developing boys," Christopher R. Engelhardt, PhD, postdoctoral research fellow, Department of Health Psychology, Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri in Columbia, told Medscape Medical News.
It is important to "routinely assess screen-based media habits when addressing sleep problems in children ASD, because this may represent an important intervention target for improving sleep," Dr. Engelhardt and colleagues write.
The report was published online November 18, 2013, in Pediatrics.
The researchers examined relationships between in-bedroom access to television, computers, and video games and sleep habits in 49 boys with an ASD, 38 with ADHD, and 41 typically developing boys. All were between 8 and 17 years old.
In all 3 groups, bedroom access to media was associated with less time spent sleeping each night.
Boys with a television in their room spent an average of 8.3 hours sleeping per night compared with 9.0 hours for boys without a television in their bedroom (P < .001). Boys with a computer in their room got 7.9 hours of sleep nightly compared with 8.7 hours for boys who did not have a computer (P = .002). Boys with an in-room video game system got 8.3 hours of shuteye nightly on average compared with 8.8 for boys without a video game system in their room (P < .01).
"Interestingly," write the researchers, bedroom access to a computer or television was more strongly associated with less sleep among boys with ASD compared with boys with ADHD or with those who were developing typically.
"Multivariate models showed that, in addition to bedroom access, the amount of time spent playing video games was uniquely associated with less sleep among boys with ASD. In the ASD group only, the relationship between bedroom access to video games and reduced sleep was mediated by hours of video game play," they report.
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• • •
Neurons Made From People With Autism Show Distinct Markers
By Virginia Hughes sfari.org
Quiet storms: Neurons derived from stem cells of children with autism (right) show more markers of inhibitory signaling (pink and green) than unaffected controls (left) do.
Researchers have created neurons from the skin cells of children with autism, according to an unpublished study presented Monday at the 2013 Society for Neuroscience annual meeting in San Diego. These neurons show several distinct features, including elevated markers of inhibitory signaling compared with controls.
Over the past few years, researchers have made so-called induced pluripotent stem (iPS) cells by reprogramming skin cells taken from individuals with several autism-related disorders, including Timothy syndrome, Rett syndrome and fragile X syndrome. Using certain chemical concoctions, these cells can be coaxed into becoming neurons.
The new study made neurons in this way from four children with idiopathic, or unexplained, autism and their unaffected family members. All of the children with autism also have abnormally large heads, a common feature of the disorder.
Neurons made from children with autism show a shorter cell cycle than controls do, indicating that they proliferate more quickly, the researchers found.
This makes sense, notes Jessica Mariani, a postdoctoral associate in Flora Vaccarino’s lab at the Yale Child Study Center who presented the work. “It’s saying maybe they have a big brain because they are proliferating much more."
The autism neurons also have shorter dendrites, neuronal projections that receive electrical signals, and less branching, compared with controls. “They seem to be less complex,” Mariani says.
The researchers also performed RNA sequencing to investigate gene expression in the cells. Neurons derived from children with autism show increased expression of genes that mark inhibitory neurons. These are cells that produce gamma-aminobutyric acid (GABA), a chemical that dampens brain signals.
Conversely, the autism neurons show lower expression of genes that mark cells that produce glutamate, an excitatory signaling chemical, than in controls.
These results are intriguing because they suggest a lower ratio of excitatory to inhibitory signals than would normally be seen. Many studies have suggested that autism is characterized by exactly the opposite — that is, an overabundance of excitatory signals.
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• • •
A Randomized Double Blind Placebo Controlled Clinical Trial of N-Acetylcysteine Added to Risperidone for Treating Autistic Disorders
By Ahmad Ghanizadeh, Ebrahim Moghimi-Sarani BMC Psychiatry medscape.com
Background: This study examined the efficacy and safety of N-acetylcysteine (NAC) augmentation for treating irritability in children and adolescents with autism spectrum disorders (ASD).
Method: Forty children and adolescents met diagnostic criteria for ASD according to DSM-IV. They were randomly allocated into one of the two groups of NAC (1200 mg/day)+risperidone or placebo+risperidone. NAC and placebo were administered in the form of effervescent and in two divided doses for 8 weeks. Irritability subscale score of Aberrant Behavior Checklist (ABC) was considered as the main outcome measure. Adverse effects were also checked.
Results: The mean score of irritability in the NAC+risperidone and placebo+risperidone groups at baseline was 13.2(5.3) and 16.7(7.8), respectively. The scores after 8 weeks were 9.7(4.1) and 15.1(7.8), respectively. Repeated measures of ANOVA showed that there was a significant difference between the two groups after 8 weeks. The most common adverse effects in the NAC+risperidone group were constipation (16.1%), increased appetite (16.1%), fatigue (12.9%), nervousness (12.9%), and daytime drowsiness (12.9%). There was no fatal adverse effect.
Conclusions: Risperidone plus NAC more than risperidone plus placebo decreased irritability in children and adolescents with ASD. Meanwhile, it did not change the core symptoms of autism. Adverse effects were not common and NAC was generally tolerated well.
• • •
New Study Turns Autism Research Upside-Down
By Kerry Faulkner medicalxpress.com
The paper describes that rather than a single entity, autism is multiple disorders.
Information from the families of 1200 children with autism will be collected from next month to begin the largest autism data study in Australia which includes a team of WA researchers.
Telethon Institute of Child Health Research's Andrew Whitehouse says the project involves several prominent research groups across the nation under the umbrella of the Autism Co-operative Research Centre for Living with Autism Spectrum Disorders which received $31 million over eight years from the Federal Government earlier this year.
Professor Whitehouse says the centre will further extensive work by Telethon including its recent "proof of principle" research which advocates a new approach to autism investigation and whose findings have been documented in the Frontiers of Human Science Journal.
Prof Whitehouse says rather than using the traditional "top-down" approach to investigate the causes of autism, it takes the other end of the "causal pathway," starting with the factors that may produce the disorder.
The paper describes that it is now widely accepted that rather than a single entity, autism is multiple disorders. The variability in the nature and severity of behaviours is thought to exceed that of any other.
"What researchers tend to do is look at behaviours, classify people based on that and then look for genetic or biochemical markers that might be associated with those behaviours," Prof Whitehouse says.
"What we're suggesting is going at it the other way; look at genetic or environmental factors that are known to be associated with autism and look at whether they are then associated with behaviours."
He says after 70 years, researchers are frustrated by not being able to find a clear causal pathway but the only way research can proceed is through large collaborations.
"One lab group alone is not going to be able to solve the riddle of autism—that's just not going to happen," he says.
"We need large numbers of participants who can do both the "top-down" and "bottom-up" approach and that's what we're proposing."
The recently published "bottom-up" study selected participants from the WA Autism Biological Registry to analyse two areas previously linked to ASD diagnoses; low birth weight and maternal use of selective serotonin reuptake inhibitors during pregnancy. These are found in medications used to treat anxiety and major depression.
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• • •
Stanford Drug Trial Seeks Participants With Autism Spectrum Disorder
By Louis Bergeron med.stanford.edu
Researchers at the Stanford University School of Medicine are seeking participants for a study examining the effectiveness of vasopressin, a neuropeptide, in treating children with autism spectrum disorder.
Difficulty with social interactions is characteristic of people with autism, who often have problems interpreting facial expressions or maintaining eye contact while talking with someone. There are currently no effective medicines available to treat social problems in people with autism.
Neuropeptides, such as vasopressin, are molecules used by neurons in the brain to communicate with one another. Vasopressin has been shown to facilitate social interactions in animals.
Animal studies have also shown that when the proper functioning of vasopressin is interfered with, animals develop a variety of social deficits, including impaired memory for peers and a reduced interest in social interaction.
Researchers found that when vasopressin was administered to mice with a genetically induced form of autism, their social behavior became more normal.
Vasopressin is already approved by the U.S. Food and Drug Administration for use in humans, and has proved to be a successful treatment for some common pediatric conditions, including bedwetting. It also has been shown to improve social cognition and memory in people who do not have autism.
The researchers will test the effects of vasopressin on social impairments in 50 high-functioning boys and girls with autism, ages 6 to 12. The study will last four weeks.
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• • •
Parents & Caregivers Urged to Complete Updated ARI E-2 Survey to Identify Autism Subtypes
Autism Research Institute Research Survey.
What: Comprehensive, consent-based online survey. The survey is lengthy and may take up to two hours to complete - you can start the survey and then save it, and return and complete it another time. The survey is online at: www.AutismResearchSurvey.com.
Purpose: (1) To corroborate previous research on subtyping autism and (2) to determine, based on parent responses, possible underlying causes and the effectiveness of various interventions in relation to each subtype.
Compensation: Participants who complete the entire survey will receive a complimentary one-year subscription to ARI's science newsletter, the Autism Research Review International.
Complete the survey by Nov. 30th for a chance to win In addition, participants will be entered in a contest to win an Apple iPad. Note: one entry per individual with ASD. Drawing is Dec. 1, 2013
+ Survey here.
House Teaches Autistic Adults Independence
By Valen Johnson FOX29 News Express
"Parents whose children were becoming adults started to worry about 'What's going to happen to my kids when I'm gone?'"
And the President of Autism Services of Southwest Louisiana, Geri Landry, had the answer to put parents with autistic children at ease by making a house complete with full time staff available to them.
Landry says, "It took us awhile to get it going because you have to get licenses and the whole process that you go through."
The brick home on the corner of Creole and Louis houses four residents who quickly made the house their home.
Landry describes the house, "There are four bedrooms and each bedroom has a little sitting area. It has a queen-sized bed, a walk-in closet and a bathroom large enough that the staff can go in and assist them with all they need assistance with. And then the living area...we have a nice sitting area with a nice television for community watching and we have TV nights on Friday nights. Then each evening, they have an evening meal together at the dining room table and they prepare the meals if they can."
Keeping busy is a main priority, whether it be swimming, walking, or working, at their jobs.
Landry says, "Three of the clients work at Clark in their workshops. And the others do volunteer work around the city. Maybe they come to your office and shred paper once a week or maybe vacuuming the office, something like that. We try to find different jobs for them just to get them out of the house."
And seeing the residents living and being responsible for their own lives gives Geri a sense of satisfaction.
Landry says, "I had a parent say yesterday to me that no one understands unless they've lived it, what it's like to have a child with autism. And to see them so happy, and happy in that they'll maybe never tell me that they're happy. They don't have to say anything, you can see it. It's such an awesome feeling to see it."
• • •
Could Symptoms Of Autism Be ERASED By Stimulating The Brain?
Magnets could boost social skills
By Emma Innes www.dailymail.co.uk
Magnetic brain stimulation can help people with autism with social interaction. The treatment can boost the part of the brain that is underactive in people with autism
Magnets could be used to improve the social skills of people with autism, new research suggests.
A clinical trial revealed magnetic brain stimulation can help people with autism with social interaction.
The treatment can boost the part of the brain that is underactive in people with autism, the researchers found.
Dr Lindsay Oberman, a neurologist at the Beth Israel Deaconess Medical Centre in Boston who was not involved in the study, told New Scientist that the findings are an ‘excellent start’.
Researchers at Monash University, in Melbourne, drew on previous research that showed the brain’s dorsomedial prefrontal cortex (dmPFC) is less active in people with autism.
They used repetitive transcranial magnetic stimulation (rTMS), a technique which sees magnetic pulses delivered into the brain, to try and boost the activity of the dmPFC.
This is also the part of the brain which allows people to comprehend other people’s feelings and thoughts.
Lead researcher Dr Peter Enticott, and his team, carried out the trial with 28 adults who have Asperger’s syndrome.
They gave some of the volunteers 15 minutes of rTMS every day for 10 days. The other participants were told they might be having the treatment and had coils placed on their heads, but were not given the magnetic pulses.
Before and after the treatment, the volunteers took part in a range of tests of their social skills – the results of these tests showed the patients who had been given rTMS had significantly improved social skills.
The researchers said that in one case, a patient started making tea for her sibling who was revising for an exam.
The researchers say this was a dramatic improvement as it showed the woman understood her sibling’s needs and that she wanted to help.
Dr Enticott told New Scientist: ’As far as her family were concerned, this was completely foreign to her. She had never shown any inclination toward that sort of activity in her life.’ The team also found the volunteers who had been given rTMS experienced reduced anxiety levels.
In contrast, people who had been given placebo therapy did not experience any improvement.
Despite the improvements seen in the participants’ social skills, they showed no improvement in their ability to understand other people’s mental states.
Dr Enticott told New Scientist: ‘It surprises me. We are stimulating the region of the brain that is most closely associated with these tasks.’ Dr Oberman believes this could be because the dmPFC is buried deep within the brain meaning it is hard to target with rTMS.
The researchers say the next step is to establish how long the improvements last for.
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• • •
What Happens When A Child With Autism Refuses Most Foods?
By Barbara Bronson Gray, Healthday
The life-threatening health problems that a 9-year-old boy with autism faced recently shed light on an issue that is rarely discussed.
Many children with autism or other developmental disorders tend to eat an extremely narrow range of foods, and this may put them at risk for serious health problems, said Dr. Melody Duvall, lead author of the case report, which was published online Nov. 4 in the journal Pediatrics.
What is it about autism that often makes children resistant to eating a normal and varied diet? One expert had some theories.
"We know many children with autism spectrum disorder have sensory issues, are overly sensitive to certain textures, sounds and perhaps tastes," said Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at the Steven & Alexandra Cohen Children's Medical Center in New Hyde Park, N.Y. "And many children with an autism spectrum disorder will have an insistence on sameness, are comfortable with routines and have difficulty with transitions."
Those traits often make children insist on eating only a very limited combination of foods, Adesman explained.
"This case report highlights how atypical and narrow the diets are with some children with autism or other severe developmental problems, and that the potential for serious health consequences can follow," said Adesman.
In the case of the 9-year-old boy, the situation was extremely challenging to figure out, explained Duvall, his physician at Boston Children's Hospital. He came to the emergency department twice, complaining of hip pain so severe he refused to walk. Physicians looked for neurological or orthopedic reasons for the limp, but found no underlying cause. Physical therapy only worsened his discomfort. He had the usual blood tests, and they were normal.
The physicians then thought he might have Lyme disease, but it was ruled out, Duvall said. He then started developing serious lung and heart problems, had a rapid heart rate, dry cough and difficulty breathing. Eventually, he became so ill he was taken to the intensive care unit, she added.
A chest x-ray showed his right lung and the lower parts of his left lung were filling up with fluid. Tests showed the right side of his heart was functioning poorly. Physicians thought he might have pneumonia, or even cancer, but those possibilities were eliminated by further tests.
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• • •
UK Autism Rates Plateau While US Rates Continue to Climb
By Deborah Brauser medscape.com
Although annual incidence rates of autism diagnoses increased dramatically during the 1990s in the United Kingdom, these rates "reached a plateau" by the beginning of the 2000s and have remained steady, new research suggests.
A population study of almost 2 million children in the UK who were 8 years old between 2004 and 2010 showed that yearly prevalence rates during this period stayed steady at approximately 3.8 per 1000 boys and 0.8 per 1000 girls.
In addition, incidence rates for UK children stayed around 1.2 per 1000 boys and 0.2 per 1000 girls each year of the study period.
"The attention to autism was modest in the 1990s at a time when the diagnosis rate was going off the chart. After 2000, the public and media attention went up dramatically in both the US and the UK — but our well-documented UK data indicate that there's been no change in the rate of diagnosis there in the 2000s," Hershel Jick, MD, associate professor of medicine at Boston University School of Medicine in Massachusetts, told Medscape Medical News.
The investigative team, consisting of researchers from both the United States and the UK, note that these findings differ significantly from a report released in 2012 by the US Centers for Disease Control and Prevention (CDC) showing that the prevalence rates of autism in American 8-year-olds increased 78% between 2004 and 2008, to a 2008 rate of 1 in 88 children.
"This…suggested a continuation of the dramatic increase in children diagnosed as autistic, which occurred in the 1990s," they write but add that whether the prevalence rates actually increased in the US "remains uncertain."
"This becomes a matter of how you diagnose and who does the diagnosis of autism in each country. And that becomes a matter of controversy, of which there is no obvious explanation, at least to us," said Dr. Jick.
The study was published online October 16 in BMJ Open.
The investigators note that the CDC's press release last year prompted them to examine information in the UK General Practice Research Database (GPRD) to compare prevalence rates.
"For direct comparison with the CDC study, we restricted our results to 8-year-old children," they write.
The researchers also sought to examine incidence rates.
The GPRD is a collaborative database created by the Boston Collaborative Drug Surveillance Program, Vamp Health, and a UK general practitioner. By 1996, the database had enrolled 1000 general practitioners from 300 practices.
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• • •
Computer Automation System Improves Autism Screening Rate
An automated system developed by researchers from the Regenstrief Institute and Indiana University to help pediatricians focus on the specific health needs of each patient in the short time allotted for preventive care improves autism screening rates by identifying at-risk children at the 24-month visit. Nationwide children typically are not diagnosed with autism until age 4½ or 5 years.
"Computer Decision Support to Improve Autism Screening and Care in Community Pediatric Clinics" appears in the October-December issue of the journal Infants & Young Children.
By personalizing and automating the patient screening process and then alerting the physician to the results, the Child Health Improvement through Computer Automation system, or CHICA, prompts the pediatrician to follow up in needed areas. Open-source CHICA can potentially interface with any electronic medical record system.
CHICA has supported the care of more than 36,000 patients since its 2004 implementation for pediatric preventive care and disease management at community clinics associated with Wishard-Eskenazi Health in Indianapolis. Half of the families served by CHICA are black, and a third are Hispanic. More than two-thirds of the families have Medicaid.
At each visit, CHICA produces a 20-question prescreening form (in English or Spanish) personalized to the patient, linked to the child's electronic medical record and completed by parents in the waiting room. At the 24-month visit, CHICA produces a standard autism screening instrument that is automatically scored. If concerns are raised, the physician receives an alert to verify and make a referral for further work-up and/or early intervention. If the electronic medical record indicates higher risk for autism (for example an autistic sibling), CHICA bypasses formal screening and alerts the physician to refer the child for further evaluation.
Approximately 1 in 88 children has been identified with an autism spectrum disorder, according to estimates from the CDC's Autism and Developmental Disabilities Monitoring Network. Once an autism diagnosis is made, it is easier for a family to obtain needed services, including early intervention to gain developmental skills.
"It is natural to worry about your child's development. Parents bring concerns to the pediatrician, and while pediatricians know how children should be developing, visits are brief—and there is a tremendous amount to cover and juggle during that visit," said Regenstrief Institute affiliated scientist Nerissa Bauer, M.D., assistant professor of pediatrics at the Indiana University School of Medicine, where she is part of the Children's Health Services Research group.
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• • •
Autistic Children On Medicaid Missing Out On Crucial Therapy
By Gregory J. Wallance, articles.orlandosentinel.com
A dark-haired, 7-year-old Florida child from an impoverished family, called K.G. in court papers, recently struck a blow to eliminate one of the most unjust health-care disparities in America.
At 18 months, K.G. was diagnosed with autism. K.G. banged his head against a wall, bit himself, incessantly threw tantrums, barely made eye contact or spoke more than two or three words, and isolated himself from other children. His only hope was a therapy known as applied behavioral analysis, long considered by every authoritative voice in American pediatric health care — from the U.S. surgeon general to the Centers for Disease Control and Prevention — to be the one effective treatment for autism disorders.
Indeed, 34 states, including Florida, require commercial insurance plans to cover the cost of this therapy for children and adolescents.
K.G.'s parents could not afford either commercial insurance or the therapy. They applied to the Florida Agency for Health Care Administration, which administers the state Medicaid program, to cover the therapy's costs. The agency denied the application on the ground that the therapy was "experimental." K.G.'s only alternative was the disabilities waiting list, where the average wait time for medical assistance was at least five years.
In 2011, K.G. and his parents filed a federal civil-rights lawsuit against the agency. At a preliminary hearing, U.S. District Court Judge Joan Lenard of Miami ruled that the therapy was not experimental and directed the agency to immediately cover the costs of K.G.'s therapy, pending a final hearing.
As revealed at the final hearing in 2012, after the first month of therapy, K.G.'s kicking, biting and hitting, which occurred 60 times during a three-hour session at the initial assessment, had ceased. He slept better, smiled, said "hello" to people, and even spoke in sentences.
"I am seeing again the baby that I had, happy and smiling," his mother testified, "a baby that I lost." But, terminating the therapy "would be catastrophic. It is a law of life that I'm not going to be eternal. What kind of future is he going to have?"
Calling the case one of the most important that she has ever heard, Lenard ordered the agency to continue covering the cost of K.G.'s therapy, and to make it available to other Medicaid-eligible autistic children in Florida. The agency appealed to the U.S. Court of Appeals for the 11th Circuit, which in September substantially affirmed the lower court's ruling.
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• • •
Georgia Health Mandate Commission Nixes Autism, Hearing Aids For Kids
By Walter C. Jones Morris News Service
A Georgia commission created to review requiring new coverages on health plans voted overwhelmingly Monday to reject three proposed mandates.
The appointee doctors, administrators, insurance executives and lawmakers voted to recommend that the General Assembly not order individual and small-group plans to cover early treatment of autism, children’s hearing aids and physician-prescribed diets. The vote was the outcome of multiple hearings in which commission members heard tearful testimony from parents, patients and medical professionals about the need for each of these treatments.
The vote, though, hinged on costs.
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• • •
The Day My Son Went Missing
Wandering Is a Major Concern for Parents of Children With Autism
By Lori McIlwain NY Times Opinion
Now in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.
While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.
The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.
Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.
Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.
Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.
Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love."
Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K."
That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.
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Change Disney's Disability Pass Policy
Disney replaced its Guest Assistance Card with a Disability Access Service (DAS) Card. For many of you, Disney parks have been an integral part of your family’s vacation experience – and for some, the pre-eminent option for your loved ones.
The DAS Card allows people to now “virtually” wait in line for attractions, meaning that you will now have to wait, but you don’t have to do so in the actual line. The person with the disability must have their picture taken for the card, and you must go to kiosks located in the park to have Disney employees place you on a waiting list for the ride of your choice. The wait time is based on the actual wait time for the ride, minus ten minutes. While you wait, you can go on other rides using the regular line or do other things in the park, but you can only have one ride on the DAS card at a time.
Have you been to a Disney park and experienced this new system? We want to hear from you! ARCA, which represents California’s 21 non-profit regional centers that serve over 260,000 Californians with developmental disabilities, is in ongoing discussions with Disney management concerning this change. Now we want to bring to Disney, at the highest levels, data that actually shows what your reality has been. This brief and confidential survey will help us, and your input would be invaluable. It should take you roughly four minutes to complete.
To access the survey, please go to: www.surveymonkey.com/s/DAS_Card_Survey Please respond by Tuesday, November 19th!
In This Issue:
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