Tuesday, January 26, 2010

Special, gifted

By Michael Tan
Philippine Daily Inquirer
First Posted 21:41:00 01/14/2010

Filed Under: Children, Health, Air Transport

LAST Wednesday I began to write about the wide spectrum of conditions we are dealing with when we talk about special children. I discussed global development delay (GDD), mental retardation (MR) and autistic spectrum disorders (ASD), and how there might be overlaps with these conditions.

To make things even more complicated, there are many other medical conditions that are not just associated with, but might actually be the causes, of GDD and MR. For example, a child’s speech delay might be due to a hearing disability. Lead poisoning, which can come from house paint and vehicular emissions, can likewise affect mental development.

The term “special child” is a good one, but carries over the strong stigma associated with older terms, for example, “retarded” or even “mentally ill,” which is the way society stereotypes and judges people. I have heard conversations where someone used the term, and got a response like, “Ah, abnormal child” or “Ah, retarded.”

Hidden labels

The hidden labels of “abnormal” and “retarded” are dangerous, often blocking parents from going to seek professional help and diagnosis, or marginalizing the stigmatized child in school and in the community.

Who knows how many children were forced to drop out of schools because they seemed “retarded” when the slower mental development might have been caused by easily reversible iron deficiency anemia, or malnutrition?

Some years back in my work in an urban poor community in Quezon City, I encountered someone who had dropped out of school at the age of 14, ashamed because he had only reached fourth grade. I suspected he had a learning disability called dyslexia, where the letters in words keep getting interchanged, which makes reading difficult. My suspicions came from the way he would text messages, as well as read signs. We never got to confirm if he had dyslexia because his family could not afford the diagnostic tests. He is now 20 and has a family, but can only find occasional work.

The term “special child” does include those with learning disabilities, and there’s another wide range of conditions here, many of which many families still don’t recognize. Even near-sightedness can create learning difficulties, yet in developing countries like the Philippines, many families do not have their children’s vision checked, partly because of economics and partly because there is still the idea that children don’t generally need glasses.

It might help then if we shift our mind-sets away from “special child” (and its continuing negative connotations) to “children with special needs.” This is especially important for teachers, who tend to only recognize the more extreme and visible “outliers” from the norm: the very “bright” ones, who are then labeled “gifted” and the ones who seem “slow.”

I am sorry about all those quotation marks but as I pointed out on Wednesday, intelligence is a controversial concept. You may have children labeled mentally retarded who have awesome skills in some fields, for example, math or music.

The old term used for them was “idiot savant” but objections have been raised with the term “idiot” so today there are alternative terms like “autistic savant” and even “mega savant,” emphasizing the aspect of genius.

My point is that we may have many savants out there whose potentials will never be developed because our biases about what is normal block us from seeing less apparent forms of genius.

Interchanged terms

Let’s get back now to the Cebu Pacific controversy. Some media reports said that the airline had a rule against boarding more than one passenger with “mental illnesses” on each flight. Other reports said it was more than one “special child.” The way the two terms are interchanged shows that our fears of the “special child” stem from a notion that they are mentally ill.

In the Internet exchanges about the Cebu Pacific incidents, people have argued that special children should not be allowed to fly because they become unruly or violent and could endanger other passengers. Others paint a scenario where there is a flight emergency and that flight attendants would have a hard time evacuating the “retarded.”

But if we use such criteria we would then have to set passenger quotas on people who tend to binge on alcohol. We would also need quotas for infants and toddlers, on the elderly, and on people who are physically handicapped, even someone having a cast for a fractured arm or foot.

The Cebu Pacific controversy reminded me of a case in the United States. In October last year, a woman from New Mexico filed a lawsuit against three airlines that were operating a flight from which she had been asked to disembark. The incident dated back to 2006 and what had happened was that she was breastfeeding her one-year-old daughter while waiting for the plane to take off. The flight attendant asked her to cover herself with a blanket and when she refused, she was made to get off the plane.

The passenger’s complaint led to women launching protest actions in 19 airports where they breastfed in public.

My point is that airline policies often only reflect public notions of morality and what is “normal” or “abnormal.” Cebu Pacific’s policy only reflected public discomfort with and fears of “special children,” and unfortunately, the ones who are most visible with their conditions – children with Down syndrome and global developmental delays, for example – end up the most stigmatized.


Rather than training our sights on Cebu Pacific alone, we need to look at how we respond to special children in general in our own homes and schools.

Let me give a concrete example here. Right now, special children usually end up in special schools, which can be very much more expensive than regular schools. Now, what would happen if regular schools began to accept special children? It is actually happening, with a handful of schools, but with quotas and with a screening process that assesses whether the special children can handle life in the regular school.

It’s a good policy, expanding the options for the special children, while allowing “regular” children to become part of the worlds of special children. I visited one such school the other day and realized this is possible only when the schools’ parents and teachers value diversity.

Unfortunately, many of our schools and social institutions, fear anyone who’s different. They will not even allow adopted children, for example, or children of single mothers and separated couples simply because they don’t fit into definitions of a “normal” family. The underlying message of such discriminatory policies is that the “abnormal” children – adopted, “special,” whatever – might “contaminate” the “normal” ones.

Ultimately, we have to recognize that while special children need more time and attention, we also need to be sensitive to how children can be so different from each other, so that siblings in a family or children in one class, will need individualized attention. With that kind of thinking, we would value all children as special, and as gifted.

SM, ASP celebrate National Autism Week

MANILA, Philippines - The SM Committee on Disability Affairs, under the CSR umbrella of SM Cares, together with the Autism Society Philippines (ASP), is celebrating the 14th National Autism Week with the theme “Giant Leaps...Transcending Boundaries” simultaneously in all SM malls nationwide until Jan. 24.

Engineer Bien Mateo, chairman of the SM Committee on Disability Affairs, was made by the ASP as this year’s honorary chairman of the 14th National Autism Week Working Committee.

The celebration took off on Jan. 17 at the SM North Edsa Skydome with a Holy Mass and Family Fun Day. It will culminate with “Angels Walk for Autism” on Jan. 24 at the SM Mall of Asia.

The National Autism Week, which is celebrated every year, aims to raise public awareness on the need to provide a supportive environment among communities to enable children and adults with autism to live with dignity and enable them to function independently and contribute productively to society.

Autism is a lifelong disability and getting people to understand and support ASP activities can make a real difference to the lives of those affected with autism and their families.

SM, through its Committee on Disability Affairs, has been very supportive of the causes of the ASP.

It has offered SM Malls as a venue for all their activities and hosted last September the first-ever sensory film showing of the Disney animated movie “Up,” which was attended by some 100 kids with autism and their families.

Because of its success, the sensory film program will be rolled out nationwide in SM Cinemas and will be scheduled in close coordination with ASP.

Friday, January 22, 2010

High Rates Of Birth Defects Found In Autistic Children

Nearly two-thirds of the children with Autistic Spectrum Disorders recorded in the National Birth Defect Registry (NBDR) also suffer from structural birth defects, according the national nonprofit, Birth Defect Research for Children (BDRC). The group reported that most of the defects affect the face, head and central nervous systems of newborns.

Birth Defect Research for Children, a national nonprofit founded in 1982, maintains the registry to collect data from parents on all kinds of structural birth defects and functional deficits including autistic spectrum disorders. Betty Mekdeci, executive director of BDRC explains, "We designed the registry with a collaboration of prominent scientists. The registry's extensive data allows researchers to identify possible patterns underlying the incidence of birth defects as well as prenatal conditions and exposures. We are asking all parents of children with structural and functional birth defects to contact us to register for our database to continue this study."

"Our current data suggests that genetic and environmental triggers may interact to account for the increase in ASDs. We need to collect more data to confirm the pattern we are seeing."

The new analysis reveals that over 60% cases also had structural birth defects, primarily Central Nervous System (CNS) or Craniofacial Defects. The other 40% of the ASD cases reported associated developmental problems, but no reported structural birth defects.

Most frequent CNS disorders reported were Microcephaly (small head), Cerebral Palsy, Chiari Malformation (a structural defect of the brain) and Absent or Thin Corpus Callosum (the band connecting the two halves of the brain), The most frequent Craniofacial Defects included Low Set Ears, Partial Hearing Loss, Abnormal Teeth and Abnormal Facial Structure.

The registry also collects data on prenatal exposures to medications, illnesses and toxins. The most frequently reported maternal exposure was acetaminophen (AP). AP use has increased in recent years. Recent studies have reported associations between maternal AP ingestion and childhood asthma and a stomach defect called gastroschisis.

Scientific Learning's Fast ForWord Software Approved By Australian Government As Intervention For Children With Autism

Scientific Learning Corp. (NASDAQ:SCIL) today announced that the Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs has named the Fast ForWord ® family of products as an approved intervention for children under age six who are diagnosed with Autism Spectrum Disorders (ASDs).

Designed to accelerate learning by developing the student brain to process more efficiently, the Fast ForWord educational software consists of scientifically proven, intervention programs that apply neuroscience principles to build the fundamental cognitive skills required to read and learn. The strengthening of these skills results in a wide range of improved critical language and reading abilities, such as phonological awareness, phonemic awareness, fluency, vocabulary, comprehension, decoding, working memory, syntax and grammar.

In Australia, the Fast ForWord program is available to eligible children under the Helping Children with Autism funding package. Through this package, the Australian Government is working to address the need for support and services for children with ASDs. As part of the package, the government offers funding for early intervention services for children ages zero to seven who are diagnosed with an ASD. Eligible families can access the Fast ForWord program from Scientific Learning's two Value Added Representative (VAR) organizations in Australia, LearnFast Australia/Lindfield Speech Pathology & Learning Center in Sydney, New South Wales and Sonic Learning in Perth.

Communication Problems In The Brain

Maturation disorders of nerve terminals may trigger autism; researchers in Heidelberg publish in the Proceedings of the National Academy of Sciences

For brain cells to communicate, the contacts to each other must function. The protein molecule neuroligin-1 plays an important role in this as it stimulates the necessary maturation processes at the contact sites (synapses) of the nerves. A synaptic maturation disorder is possibly involved in the development of autism. Dr. Thomas Dresbach and his team from the Institute for Anatomy and Cell Biology at the University of Heidelberg, in cooperation with the study group led by Professor Dr. Thomas Kuner at the same institute and Professor Dr. Nils Brose, Max Planck Institute for Experimental Medicine in Göttingen, have published their results in the prestigious international journal PNAS (Proceedings of the National Academy of Sciences).

One hundred billion nerve cells make our brain a thinking machine. Each of these nerve fibers produces a long extension, the axon, which terminates in numerous small knobs. Transmitters are released here that transfer information to the next nerve cell. The contact site between nerve ending and adjacent nerve cell is called a synapse. The number and location of active synapses determine which areas of the brain are especially active at a given time.

Neuroligin-1 protein necessary for maturation

The synapses of young nerve cells must mature before they can release their neurotransmitters to the full extent. Researchers were able to show using genetically modified nerve cells from mice that the postsynaptic nerve cell, the receptor, must form a sufficient amount of a certain protein molecule, neuroligin-1, to allow this maturation process to take place. In addition, the nerve endings from where information is sent must release slight amounts of neurotransmitters to stimulate the neuroligin in the postsynaptic nerve cell.

"A fully functioning contact can develop only if both sides, transmitter and receptor of information, are involved in the maturation process," explained Dr. Dresbach. If no neuroligin-1 is formed, the nerve endings remain at an immature stage and release fewer neurotransmitters; the flow of information is interrupted. The nerve endings can only whisper, so to speak.

Autism caused by a malfunction at the synapses?
"The results are significant for actual concepts about how autism develops," says Professor Dr. Joachim Kirsch, director of the Institute for Anatomy and Cell Biology. Symptoms of autism are first noticed in early childhood as an information processing disorder. The symptoms may be more or less pronounced, but all patients display weaknesses in social contacts and communication. "There are many indications that malfunctions of synaptic molecules are involved in the development of this illness. It has thus far been unclear exactly what these malfunctions are, but we now know what to look for," says Professor Kirsch. The study was funded by the FRONTIER program of the excellence initiative at the University of Heidelberg.

Rate Of Autism Disorders Climbs To 1 Percent Among 8 Year Olds

Autism and related development disorders are becoming more common, with a prevalence rate approaching 1 percent among American 8-year-olds, according to new data from researchers at the University of Alabama at Birmingham (UAB) School of Public Health and the Centers for Disease Control and Prevention (CDC).

The study is a partnership between UAB, the CDC and 10 other U.S. research sites. It shows that one in 110 American 8-year-olds is classified as having an autism spectrum disorder (ASD), a 57 percent increase in ASD cases compared to four years earlier.

The new findings, published Dec. 18 in the CDC's Morbidity and Mortality Weekly Report (MMWR), highlight the need for social and educational services to help those affected by the condition, said Beverly Mulvihill, Ph.D., a UAB associate professor of public health and co-author on the study.

ASDs are a group of developmental disabilities such as autism and Asperger disorder that are characterized by delays or changes in childhood socialization, communication and behavior.

"This is a dramatic increase in the number of kids classified as autistic or documented on the spectrum of similar disorders," Mulvihill said. "It is not entirely clear what is causing the rise, but we know major collaborative efforts are needed to improve the understanding and lives of people and families impacted."

The MMWR study discusses possible factors that might contribute to the increase in ASD cases. They include a broader definition of autism disorders and a heightened awareness of ASD by parents, doctors, educators and other professionals. The findings do not address whether or not any of the increase is attributable to a true increase in the risk of developing ASD, more frequent and earlier diagnoses, and other factors.

Data comes from the Autism and Developmental Disabilities Monitoring (ADDM) Network, a collection of 11 sites in Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina and Wisconsin. ADDM reviewers are uniformly trained to review and confirm cases; some children included in the study have documented ASD symptoms but never received a diagnosis.

The study also found that boys are 4.5 times more likely than girls to have ASD, a finding that confirms earlier studies, says Martha Wingate, Dr.P.H., a UAB assistant professor of public health and study co-author.

"It still is not clear why males more frequently are affected," Wingate said. "One thing we know for sure is that more research is needed to quantify the effects of single or multiple factors such as diagnosis patterns, inclusion of milder cases and other components."

The ADDM sites are not selected based on any statistical pattern, but the 300,000-plus children included in the study represent 8 percent of the nation's 8-year-olds.

The Alabama Autism Surveillance Project, located within the UAB Department of Health Care Organization and Policy, is a member of the ADDM network. Funding for the project is from the CDC's National Center for Birth Defects and Developmental Disabilities Division.

About the UAB School of Public Health

The School of Public Health is a community of scholars and professionals working and teaching in varied arenas of public health with the goal of fostering research and best practices crucial to the health of our nation and its peoples. The school offers more than 20 areas of study and manages dozens of research and community-service centers.

Landmark Consensus Articles Published In Pediatrics Acknowledge The Need To Improve Treatment Of Gastrointestinal Disorders In Individuals With Autism

A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self-injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.

Because it was felt that many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, representatives from the Autism Research Institute (ARI) and other autism advocacy groups worked to convene a gut consensus meeting from which the articles were derived. On May 29-30, 2008, a multidisciplinary panel of 27 clinical and research experts met in Boston, Massachusetts to develop recommendations for the evaluation and treatment of GI disorders in individuals with ASD.

ARI's Director Dr. Stephen Edelson commented, "This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism. This published report brings much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions of the report are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative."

Parents and physicians should be on the lookout for the most common GI symptoms reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, reflux, and abdominal bloating. Problem behaviors such as self-injury and aggression, as well as overall changes such as sleep disturbance or irritability, might be indicators of stomach pain. The authors concluded that "The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD."

First Step Toward Needed Guidelines For Children With Autism Provided By Pediatrics Gastrointestinal Consensus Statement And Recommendations

Autism Speaks applauds the consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal (GI) disorders in children with autism spectrum disorders (ASD) released online in Pediatrics as one step in advancing physician awareness of unique challenges in the medical management of children with autism. "We are pleased to see the publication of these consensus recommendations. Autism Speaks' current efforts will take this further by creating evidence-based guidelines for physicians. The goal is to develop a comprehensive care model that will guide physicians in addressing a wide range of medical issues, including GI problems, that many individuals with autism suffer from," commented Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

The two reports published today present outcomes of a meeting held in May 2008, sponsored by the Autism Forum, in which working groups participating in the meeting reviewed current evidence on the evaluation and treatment of GI disorders specifically for children with autism. The 2008 meeting from which these consensus recommendations were derived recognized that health care practitioners severely lack solid information to guide care of children with autism and GI problems and there is a need for more research data, including genetic research, as a prerequisite to develop evidence-based guidelines specific to autism.

"The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches," reacted Dr. Dawson. "Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks' Autism Treatment Network (ATN)."

Dan Coury, M.D., ATN medical director, commented, "We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines." In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. "Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians," added Dr. Dawson.

The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.

In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, "The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN's on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD."

Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there's not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) - the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.