Tag: Actuality

Mind, Emotion, and the Spectrum of Autism

Daniel J.  Siegel M.D. 

Daniel J. Siegel M.D.
Last month was Autism Awareness month and I’m writing today to remind us that autism continues to be a compelling global issue that consumes the tireless efforts of families and professionals throughout the year.
In our human family, there are many ways the now seven billion (and rising) of us live in the world.  Our culture shapes our communication with each other interconnecting us across the planet in our fast-moving digital age.  Human societal change unfolds as cultural evolution influences us by way of how our interactions with each other shape us across the generations.  Genetic evolution, in contrast, is shaped by how our DNA (and the epigenetic non-DNA molecules shaping gene expression) is passed to us from our parents and shapes how our body grows and functions.  One part of that body is our brain, composed of the basic cells, our neurons.  And since the manner in which our neurons link with each other through synaptic connections shapestress in our mother’s womb, the experiences we ourselves have in and out of the womb—all these factors shape our neural architecture.
s how the brain functions, many factors can influence “who we become.” DNA itself and the epigenetic regulatory molecules we inherit, exposure to toxins,
We can observe variations in neural architecture through advances in technology which enable us to see that, for some individuals, an “atypical” neural pattern emerges in which the brain is larger even in utero (Eric Courchesne PhD (link is external)), and then continues to show more neurons but less differentiated connections (Marcus E. Raichle (link is external)). Our term for this “condition” or neurological variation from “typical” development is Autism Spectrum.  Though some would formally call this a “disorder,” it is important to state that challenges to adapting to our common world are experienced by individuals with this neurological set-up.
I recently had the opportunity to explore autism spectrum issues with a number of clinicians who collectively have had well over two hundred years of experience working with “people on the spectrum.”  When I trained in pediatrics before moving over to psychiatry, autism was four in ten thousand individuals—but now, with changing criteria, we see the incidence on the average as 1 in 68 individuals (CDC (link is external)).  April was Autism Awareness Month, such a high number reminds us of how important understanding what this variation in our typical human family’s neurological development really means for all of us—those on the spectrum, near it in themselves, and living with individuals along this continuum.
The first important point is to note that studies suggest that when these new criteria are applied across the lifespan, the frequency of occurrence of being on the spectrum is actually fairly uniform. What this means is that if you are in your seventies, or sixties, or fifties, or forties, for example, you are just about as likely be on the spectrum (link is external) (a bit more than one percent chance) as a child or adolescent is growing up today.  So while we need to look for “causes” we need to stay calm in the face of our understandable distress that there is a huge epidemic unfolding.  That being said, even if the increase that might really be there is less than what we thought, we still need to think deeply about what might be the most helpful strategies for families and individuals struggling with this spectrum of challenges.  So here’s what I’ll summarize is the collective wisdom of the writings and input of those individuals who’ve been living with or devoting their professional lives to being on the spectrum.
The major issues are three fold:  1. Social communication; 2. Sensory Integration; and 3. Emotional Regulation.  These three may actually be best understood as manifestations of the same fundamental issue.  One way to sense their deep connections is the following view, inspired by a number of individuals who have described their inner experience of “being on the spectrum” and supported by a breadth of clinical observation.
With input to the senses—sight, hearing, taste, smell, touch—creating an overwhelming flood of disparate elements all at once in one’s inner mental life, anything that can decrease that flood of autonomic over-arousal can be sought.  For some, this sensory integration challenge is particularly prominent not so much with the external senses, but the social sense—the input from other individual’s inner lives.  We are inherently social creatures, and the social world of others is registered in the brain in ways that, if not filtered and processed well, can be flooding.  This overwhelming sensory input can lead to the avoiding of direct face-to-face communication and eye contact, diminishing social situations in general, and also by finding sensory stimuli that can be controlled, like twirling objects or staring at lights.  In this way, atypical behaviors that are often called “self-stimulation” may actually be a form of self-soothing.  Those isolating behaviors that are thought of as social avoidance may actually be adaptive strategies for self-regulation as well.  Without the experience of social interactions, however, the needed expertise derived from repeated engagement with others leaves someone on the spectrum without the practice they need to develop competence as social communicators.  And so studies that have suggested impairment to social systems such as the mirror neuron system or decreased fusiform gyrus activation to facial stimuli may in fact be lack of use to reduce flooding (Susan Bookheimer (link is external)).
Using these scientific findings, we can imagine, create, and implement new approaches to helping those with these three challenges in social communication, sensory integration, and emotion regulation to find a way to have the constructive social engagements that will build the brain in the most adaptive and integrative ways, supporting healthy development from the earliest years onward. The time is now to make such strides in both our cultural understanding and practical application of science to support our human family across the spectrum of our varied and challenging lives.

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NSU’s College of Dental Medicine Receives $3.4 Million Grant to Enhance Dental Care and Access for People with Autism

HHS Grant Will Fund Curriculum Development and Resident Training 

 

FT. LAUDERDALEDAVIE, Fla., July 30, 2015 Dentists and other health care providers who treat patients with autism spectrum disorder (ASD) require special training to understand the skills and techniques needed to care for this growing population.

Romer Ocanto, D.D.S., M.S., CAGS, chair of the Department of Pediatric Dentistry at Nova Southeastern University’s (NSU) College of Dental Medicine, has secured a $3,398,452 grant from the Health Resource and Services Administration of the U.S. Department of Health and Human Services to provide this training to pediatric dentistry and advanced education in general dentistry residents over a five-year period. This is the third grant Dr. Ocanto has received from HRSA. Previous funding totaled approximately $3.5 million.
The program will include the development of a curriculum addressing the transition of children and adolescents with ASD to adult dental care and aims to increase access to dental care for children and adolescents with special health care needs such as ASD.
Nova Southeastern University is committed to researching and implementing new techniques to help patients with special needs,” said Dr. Ocanto. “We are excited about this opportunity to make a difference in the lives of so many people. This funding will allow us to partner with community organizations and general dentists in Florida and throughout the Southeastern U.S. to enhance dental services available to patients with autism.”
“In its short history, NSU’s College of Dental Medicine has developed a strong tradition of caring for children and adults with special needs,” added Linda Niessen, D.M.D., M.P.H., M.P.P., dean of the college.
Currently NSU’s College of Dental Medicine has pediatric special needs dental clinics at NSU’s Mailman Segal Center for Human Development in Davie, Florida; NSU Dental Care at KID in Fort Lauderdale; and Joe DiMaggio Children’s Hospital in Hollywood, Florida; along with an adult special needs dental clinic in North Miami Beach, Florida. NSU has existing relationships with Broward Health Medical Center, the South Florida Autism Charter School and the Autism Consortium/Broward County Public Schools to provide additional dental services to the special needs community.
Approximately one in 68 children has been diagnosed with ASD, according to the Centers for Disease Control and Prevention. Average medical expenses for children and adolescents with ASD are $4,100-$6,200 higher per year than children without ASD.
This project is 100% financed by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number D88HP20126 and Postdoctoral Training in General, Pediatric and Public Health Dentistry and Dental Hygiene for $3,398,452. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
About Nova Southeastern University’s College of Dental Medicine: Predoctoral and postdoctoral dental students of the college benefit from state-of-the-art educational programs and clinical facilities, dedicated staff, and an outstanding faculty recognized annually with numerous awards and honors. Research programs focus on clinical trials, biomaterials, tissue engineering, and innovative methods for delivering preventive dental services. The College of Dental Medicine’s academic programs demonstrate a special commitment to caring for medically complex patients, underserved populations, and special needs children and adults. Students and professionals come from diverse backgrounds to pursue their courses of study at the college. For more information, please visit http://dental.nova.edu.
About Nova Southeastern University (NSU): Located in beautiful Fort Lauderdale, Florida, Nova Southeastern University (NSU) is a dynamic research institution dedicated to providing high-quality educational programs at the undergraduate, graduate, and first-professional degree levels. A private, not-for-profit institution with more than 24,000 students, NSU has campuses in Fort Lauderdale, Fort Myers, Jacksonville, Miami, Miramar, Orlando, Palm Beach, and Tampa, Florida, as well as San Juan, Puerto Rico, while maintaining a presence online globally. For more than 50 years, NSU has been awarding degrees in a wide range of fields, while fostering groundbreaking research and an impactful commitment to community. Classified as a research university with “high research activity” by the Carnegie Foundation for the Advancement of Teaching, NSU is 1 of only 37 universities nationwide to also be awarded Carnegie’s Community Engagement Classification, and is also the largest private, not-for-profit institution in the United States that meets the U.S. Department of Education’s criteria as a Hispanic-serving Institution. Please visit www.nova.edu for more information.

SOURCE Nova Southeastern University
CONTACT: Jeremy Katzman, M.B.A., APR | Office of Public Affairs, 954-262-5408 (office), 954-661-7000 (cell), j.katzman@nova.edu
RELATED LINKS
http://www.nova.edu

 

Achieving a Better Life Experience

“Just because I have Down syndrome, that shouldn’t hold me back from achieving my full potential in life,” Sara Wolff said. “I can work a full-time job, be a productive member of society, and pay taxes — but because of these …

WASHINGTON, July 21, 2014  — Sara Wolff, a board member and self-advocate from the National Down Syndrome Society (NDSS), will testify before the Subcommittee on Taxation and IRS Oversight of the US Senate Committee on Finance on the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). The hearing, “Saving for an Uncertain Future: How the ABLE Act can Help People with Disabilities and their Families”, will take place on Wednesday, July 23, 2014, at 10 a.m., in 215 Dirksen Senate Office Building. 
Wolff is a 31-year-old young woman with Down syndrome from Moscow, Pennsylvania, and has been a board member of NDSS since 2007. Earlier this year, Wolff authored a change.org petition calling on members of Congress to pass the ABLE Act in the 113th Congress. Wolff’s petition has earned the support of over 250,000 people around the country.
In addition to Wolff, the Congressional panel will also include Congresswoman Cathy McMorris Rodgers, Member of Congress (R-Washington), U.S. House of Representatives, Spokane, Washington and mother to Cole, who happens to have Down syndrome; Robert D’Amelio, Parent and Advocate, Autism Speaks, Charlotte, North Carolina; and Chase Alston Phillips, Financial Advisor, Alexandria, Virginia.
“Just because I have Down syndrome, that shouldn’t hold me back from achieving my full potential in life,” Sara Wolff said. “I can work a full-time job, be a productive member of society, and pay taxes – but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life. It’s time that Congress act and pass the ABLE Act.”
The ABLE Act would amend Section 529 of the IRS Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing and transportation.
“As the mom of a son with Down syndrome, I see firsthand how federal policies limit — not expand — opportunities for those with disabilities.  And the ABLE Act will change that.  It will make sure that Cole — and the millions like him who have special needs — will be able to save for their futures and reach their full potential.  I am proud to stand beside my colleagues in Congress and those in the disability community as we advance this crucial legislation,” said Congresswoman Cathy McMorris Rodgers (R-Washington), an ABLE Act Champion.
The ABLE Act is championed by Senators Bob Casey (D-Pennsylvania) and Richard Burr (R-North Carolina) and McMorris Rodgers’ colleagues, Representatives Ander Crenshaw (R-Florida), Pete Sessions (R-Texas), and Chris Van Hollen (D-Maryland).
“There is no other bill in the U.S. Congress that has as much bipartisan, bicameral support as the ABLE Act. We have 74 U.S. Senators, including Leaders Harry Reid (D-Nevada) and Mitch McConnell (R-Kentucky), and 365 U.S. Representatives that are cosponsoring this bill,” NDSS Vice President of Advocacy and Affiliate Relations Sara Hart Weir said. “Passing this landmark legislation will go a long way to help people with Down syndrome and other disabilities realize and achieve their own hopes, dreams and aspirations.”
About NDSS
The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of a welcoming community.

SOURCE National Down Syndrome Society

Developmental Disorder

Mobile app helps parents and pediatricians detect autism in infants as early as eight months

 

SOMERSET, N.J., July 17, 2014  — After years of collaborative research and development in the field of autism, child development experts at Rutgers Robert Wood Johnson Medical School and information technology innovators at WebTeam Corporation have unveiled a powerful new screening tool capable of detecting signs of Autism Spectrum Disorder and other developmental delays in children as early as eight months old.
 
Michael Lewis, Ph.D., founding director of the Rutgers Robert Wood Johnson Medical School Autism Center, and Nish Parikh, CEO of WebTeam Corporation, a global leader in the field of autism management technology, announced the availability of EARLYThree, an easy-to-use iPhone and iPad application downloadable on iTunes. The useful app allows parents to track and record their child’s behavior at regular intervals so, if necessary, they can raise concerns with their pediatrician.
“Early signs of autism often go undetected,” observes Dr. Lewis, “simply because there are not enough physicians around the world to screen the growing number of children with autism. An ideal time to identify early signs of autism is when a child is six to eight months old, although symptoms may appear anytime during the first three years.”
“Finally,” Dr. Lewis added, “we have a tool backed by years of clinical research and pediatric practice that has a proven degree of accuracy in the early detection of autism at our fingertips. This is a breakthrough for parents and pediatricians everywhere.”
EARLYThree is the culmination of more than 50 years of research on child development, including five longitudinal studies involving 12,000 children, conducted by Dr. Lewis and principal colleague Tara Anne Matthews, MD, FAAP, while completing her three-year fellowship in Developmental Behavioral Pediatrics at Rutgers Robert Wood Johnson Medical School. Research findings, combined with clinical pediatric practice, led Drs. Lewis and Matthews to collaborate with WebTeam – winner of the 2014 Verizon Powerful Answers Award for its autism management technology – in developing a functional tool to help parents and pediatricians screen for signs of autism at its earliest stages.
EARLYThree contains sets of questions that help pediatricians and parents examine a child’s behavioral and communicative development at regular intervals to determine if the child is at risk for autism spectrum disorder. The app allows for periodic evaluation at a child’s most critical stages of development – eight, 12, 15, 18, 24 and 36 months. At the end of each screening session, users can view results in a tricolor band of green, yellow and red. Green indicates that a child does not show signs of autism. Yellow indicates that the child is on a stable course of development, but should be monitored for signs of autistic behavior. A red result warns that the child’s cognitive abilities are not at the appropriate stage of development and parents should seek further medical evaluation. The user-friendly interface includes options to add multiple video, text and voice notes that can be shared among pediatricians, parents and other caregivers.
“EARLYThree is part of an integrated solution to managing autism,” commented Mr. Parikh, whose company has launched ColorsKit – a one-of-a-kind autism management package that could effectively address the global challenge of autism. “We have the resources to enhance existing autism-related teaching tools and build powerful new educational software using assistive mobile technology,” Mr. Parikh added.
Autism is the world’s fastest growing developmental disorder. According to the Centers for Disease Control and Prevention, one in 68 U.S. children (virtually one on every school bus) has an autism spectrum disorder. While the importance of early autism screening is well-documented in medical literature, delays in diagnosis are common.
About Michael Lewis, Ph.D.
Michael Lewis, Ph.D., is a University Distinguished Professor of Pediatrics and Psychiatry, and director of the Institute for the Study of Child Development at Rutgers Robert Wood Johnson Medical School. He is a professor of psychology, education, and biomedical engineering and serves on the Executive Committee of the Cognitive Science Center at Rutgers.  The founding director of the Rutgers Robert Wood Johnson Medical School Autism Center, Dr. Lewis received his Ph.D. in 1962 from the University of Pennsylvania in both clinical and experimental psychology.
Dr. Lewis’ research has focused on normal and deviant emotional and intellectual development, and his early work focused on the normal course of children’s development. This enabled him to articulate the sequence of developmental capacities of the child in regard to intellectual growth and relate this to changes in the organization of central nervous system functioning. His discoveries of techniques to measure CNS functioning, through the use of the habituation-dishabituation paradigm, are widely used throughout the country for measuring and predicting dysfunctional growth as well as normal cognitive development. Using these measurement instruments, Dr. Lewis has developed computer-based techniques for enhancing intellectual ability in children suffering from a variety of disorders associated with developmental delays. These include children with Autism Spectrum Disorder, Down syndrome, preterm infants, and children with cerebral palsy.
Dr. Lewis has written and edited over 40 books many of which have been translated into other languages, including German, Italian, Polish, Russian, Danish, Japanese, and Portuguese.
Read more about Michael Lewis, Ph.D.
Watch this short video pitch for EARLYThree here.
About Tara Anne Matthews, MD, FAAP
Tara Anne Matthews, MD, FAAP is a Developmental Behavioral Pediatrician at Children’s Specialized Hospital in Mountainside, NJ. She has over 30 years of experience with children, and has worked in a variety of clinical settings (hospital and primary care) as a general pediatrician. She completed her three year fellowship in Developmental Behavioral Pediatrics at Rutgers Robert Wood Johnson Medical School where she has collaborated with Dr. Michael Lewis on several projects related to child development and autism.
About WebTeam Corporation
WebTeam Corporation was incorporated in 2005 in New Jersey to design, develop, and promote technologies for education and distance learning and training. It began as a technology development subsidiary of Rangam Consultants Inc., a company specializing in professional staffing services.
At the 2014 International CES, WebTeam’s innovative autism management technology received global recognition, when Verizon awarded the company $500,000 in its Powerful Answers Award Contest.
Media Contact: Nish Parikh, WebTeam Corporation, 9086270016, nish@webteamcorp.com

SOURCE WebTeam Corporation

RELATED LINKS
http://www.earlythree.com

 

Governor Scott Signs Historic Law to Provide Attorneys for Dependent Children with Special Needs

TALLAHASSEE, Fla., June 25, 2014 /  — Today, Florida Governor Rick Scott signed into law a measure that will provide attorneys to protect dependent children with special needs who are in the legal custody of the Florida Department of Children and Families (DCF)—Florida’s most vulnerable. The Florida Legislature also appropriated $4.5 million to fund attorneys to represent these at-risk children, most of whom linger in foster care –often for an average of up to five years. The bills were sponsored by Senator Bill Galvano (Bradenton) and Representative Erik Fresen (Miami).
“We applaud Gov. Scott for supporting this historic legislation that provides disabled children a lawyer when they come into Florida’s child protection system. These children need all the additional protections they can get,” said Howard Talenfeld, President of Florida’s Children First, the statewide organization that has fought for this legislation since the report was issued.  “Since 2002, The Florida Bar Commission On The Legal Needs of Children recognized the critical necessity to appoint attorneys for vulnerable, abused and neglected children in the custody of the state. This is truly a historic day.”
Recently, the Miami Herald conducted a special investigation regarding 477 children in Florida who have died from abuse and neglect, including many children with special needs. One such child, Tamiya Audain, a 12-year-old Broward girl who had autism and a rare medical disease, starved to death in September 2013 as a result of neglect in the home of a relative with whom she was placed after her mother died – http://www.miamiherald.com/2013/10/08/3678478/state-records-show-pattern-of.html.  
“Like so many other special needs children in state custody, she did not have the critical services and support that would have kept her alive had an attorney been appointed to represent her,” said Christina Spudeas, Executive Director of Florida’s Children First.
“Because children are the only parties in dependency cases that do not have their own counsel, Gov. Scott and The Florida Legislature have delivered on our obligation to Florida’s most vulnerable children to provide them counsel to ensure that they are safe and obtain the critical services that they need,” said Sen. Galvano.
The law provides attorneys for dependent children who have a number of special needs including developmental disabilities, (as defined in s. 393.063), medical disabilities for children who reside in or are being placed in a skilled nursing facility, psychiatric disabilities for children who reside or are being placed or considered for placement in a residential treatment center or who been prescribed psychotropic medications and refuse to take them, and for children who are victims of human trafficking.
Under the new law, funding will be provided for an attorney skilled in both administrative and in juvenile court proceedings to provide necessary legal representation to these disabled children. Such agencies include the Florida Agency for Persons with Disabilities, the Agency for Health Care Administration, the Social Security Administration in applications and denials for benefits from the state and federal agencies and their school districts. Without appropriate representation, disabled children spend many years in the custody of the state of Florida instead of with families who would care for them.
“These children often cannot speak for themselves, and if they can, they find themselves in courtrooms or complex administrative hearings without any representation,” said Rep. Fresen. “We wouldn’t send a criminal defendant into such a situation without counsel. It’s time we provide the same legal support and representation for the state’s most vulnerable and innocent citizens when their lives are at stake.”
“The GAL’s ‘best interest’ attorneys, staff and volunteers, working with attorneys created by this new legislation on these complex cases, will be a formidable advocacy team to get children permanency,” said Alan Abramowitz, Executive Director of Florida’s Statewide Guardian ad Litem Program. “The addition of these skilled attorneys to advocate for their disability benefits, educational services and a permanent family is a giant step forward in improving our state’s child protection system,” said Abramowitz, who advocated for the critical legislation.
Contact Michelle Friedman
Boardroom Communications
(904) 641-3226
mfriedman@boardroompr.com

SOURCE Florida’s Children First

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