Thursday, January 31, 2008
Study Shows Variety of Approaches Help Children Overcome Auditory Processing and Language Problems
For children who struggle to learn language, the choice between variousinterventions may matter less than the intensity and format of theintervention, a new study sponsored by the National Institute onDeafness and Other Communication Disorders (NIDCD) suggests. The study,led by Ronald B. Gillam, Ph.D., of Utah State University is online inthe February 2008 Journal of Speech, Language, and Hearing Research.NIDCD is one of the National Institutes of Health.The study compared four intervention strategies in children who haveunusual difficulty understanding and using language, and found that allfour methods resulted in significant, long-term improvements in thechildren's language abilities. The aim of the study was to assesswhether children who used commercially available language softwareprogram Fast ForWord-Language had greater improvement in language skillsthan children using other methods. This program was specificallydesigned to improve auditory processing deficits which may underlie somelanguage impairments. Children who have auditory processing deficits canjumble the order of sounds that are heard in close sequence. Researchersbelieve that this deficit can interfere with vocabulary and grammardevelopment."These results show that any of a number of intensive educationalapproaches can make a tremendous difference for children whose languageand auditory processing skills are lagging," says NIDCD director JamesF. Battey, Jr., M.D., Ph.D. "Even play with peers seemed to support theimprovements the children in this study made.""We had a very positive outcome," says Dr. Gillam. "Our results tell usthat a variety of intensive interventions that we can provide kids willimprove auditory processing and language learning."While most children are chattering easily by the time they are toddlers,about 7 percent struggle to speak, read and understand language despitehaving adequate hearing, intelligence and motor skills. Children withlanguage impairment have trouble learning language or expressing theirthoughts through language. They often have difficulty learning newvocabulary words or sentence structures, comprehending what's said tothem, holding conversations, or telling stories. These children tend toperform poorly on measures of auditory processing and standardized testsof language development. Many of these children are hinderedacademically throughout their formal education, explains Dr. Gillam.To address auditory processing problems, a different group of languageresearchers developed the computer software package called FastForWord-Language several years ago. The program uses slow andexaggerated speech to improve a child's ability to process spokenlanguage. As children advance through the program, subsequent languageexercises use gradually faster and less exaggerated speech. Dr. Gillam's team designed a study that would compare FastForWord-Language to three other interventions. He and colleagues at theUniversity of Kansas, the University of Texas at Austin and theUniversity of Texas at Dallas enrolled 216 children in the trial. Allwere between ages 6 and 9 and had been diagnosed with languageimpairment. The children, from Northeast Kansas, Central Texas or North Texas, wererandomly assigned to receive one of four possible interventions. Inaddition to Fast ForWord-Language, the trial included anothercomputer-assisted language intervention, an individual languageintervention with a speech-language pathologist, and a nonlanguageacademic enrichment intervention that focused only on math, science andgeography. The other computer-assisted language intervention, which used Earobicsand Laureate Learning Systems software, differed from FastForWord-Language in not using slow or exaggerated speech. Groups ofchildren worked on the computer intervention exercises at their own pacewearing headphones and supervised by a speech-language pathologist.Children assigned to the individual language intervention workedone-on-one with a speech-language pathologist for the duration of thetrial. In their sessions, the children read picture books that containeda variety of age-appropriate vocabulary words.In the academic enrichment intervention, children worked on educationalcomputer games designed to teach math, science and geography. Thisintervention was delivered in the same way as the language-focusedcomputer interventions. It served as a comparison group against whichthe researchers could measure the results of the language interventions.All of the interventions were delivered in an intensive, six-week,summer program that also included day camp activities such as arts andcrafts, outdoor games, board games and snack time. The children attendedthe program five days per week for three and a half hours per day. Theypracticed their assigned interventions for an hour and forty minuteseach day. The children took a standard language test - the ComprehensiveTest of Spoken Language - and completed a variety of auditory processingmeasures at the beginning and end of the program as well as three andsix months afterward. The children in all four groups demonstratedstatistically significant improvement on the auditory processingmeasures and the language measures immediately after their six-weekprogram.The children showed even greater improvement when their language skillswere tested again six months later. Even a subgroup of children withvery poor auditory processing skills made improvements on the auditoryprocessing tasks and the language measures. About 74 percent of childrenin the Fast ForWord-Language group made large improvements on thelanguage measures. Sixty-three percent of children in thecomputer-assisted language intervention group made large improvements.Of those who worked with a speech-language pathologist, 80 percent madelarge gains, and in the general academic enrichment group, almost 69percent made large gains. These gains are much larger than theimprovements that have been reported in long-term studies of childrenwho have received language therapy in public school settings. The researchers were surprised that such a large percentage of thechildren who worked on the math, science and geography computer gamesimproved their auditory processing and language skills. They speculatethat all the children may have benefited from the opportunities tolisten carefully, to decide on an appropriate response based on whatthey heard, and to practice language skills with each other. Therecreation and play time built into each day of the six-week programgave the children the chance to form friendships with peers who werefunctioning at similar language levels. The intensive delivery of the interventions - 500 minutes per week - mayalso have benefited kids in every intervention group. In comparison,school systems typically offer speech-language pathology services tostudents with language impairment for 30 minutes twice per week."I urge speech-language pathologists to engage children with auditoryprocessing problems and language impairments in activities in which theyhave to listen carefully, attend closely and respond quickly, and to doit in an intense manner," says Dr. Gillam. "And clinicians shouldprovide children with ample opportunity to converse, socialize andinteract with kids at their same developmental level."The language intervention trial was also supported by a grant from theNational Institute of Child Health and Human Development (NICHD) to theKansas Mental Retardation and Developmental Disabilities Research Centerat the University of Kansas. NICHD is also part of the NationalInstitutes of Health.The NIDCD supports and conducts research and research training on thenormal and disordered processes of hearing, balance, smell, taste,voice, speech and language and provides health information, based uponscientific discovery, to the public. For more information about NIDCDprograms, see the Web site at www.nidcd.nih.gov.The National Institutes of Health (NIH) - The Nation's Medical ResearchAgency - includes 27 Institutes and Centers and is a component of theU.S. Department of Health and Human Services. It is the primary federalagency for conducting and supporting basic, clinical and translationalmedical research, and it investigates the causes, treatments, and curesfor both common and rare diseases. For more information about NIH andits programs, visit www.nih.gov.
On the ballot: renovation of Greenvale school; no additional cost to districts
The Nassau BOCES mission statement is clear: we are “dedicated to providing the best possible education for learners of all ages and abilities.” That’s why the Board and administration have scheduled a county-wide vote—residents are being asked to approve renovations that will enhance our ability to serve youngsters with disabilities.
Vote February 12 11 a.m. to 8 p.m.
Nassau BOCES Administrative Center, Garden City
Alternative Learning Program, Greenvale
Barry Tech, Westbury
Eagle Avenue School, West Hempstead
Rosemary Kennedy Center, Wantagh
Specifically, Nassau BOCES is asking voters to approve an expenditure of up to $14.9 million for the expansion and renovation of our building in Greenvale, which currently houses the Alternative Learning Program (ALP), a high school for teenagers who are academically capable but have difficulty with peer and adult relationships. Classrooms, computer labs and related spaces will be added to accommodate a growing demand for services, especially for youngsters who have autism spectrum disorders, including Asperger’s Syndrome. Not only is enrollment expected to grow by 25 to 30 percent, but these students’ Individual Education Plans (IEPs) legally require smaller class sizes (6:1:1 ratio—six students, one teacher, one aide).
The law requires a county-wide vote to approve such a project. “But it’s important to understand that this renovation will come at no additional cost to local school districts or county taxpayers,” says District Superintendent Dr. James D. Mapes.
Since the referendum is county-wide, residents can vote at any one of the five polling locations. No special registration is necessary; eligible adults will be asked to sign a sheet verifying that they are U.S. citizens, 18 years of age or older, and have lived in Nassau County for at least 30 days.
On the ballot:
Shall the Board of Cooperative Educational Services of Nassau County (“BOCES”) be authorized to demolish portions of, construct additions to and reconstruct, alter, improve, and repair, including original equipment, machinery, apparatus, appurtenances and incidental improvements and expenses in connection therewith, the school building known as Greenvale Center, located at the intersection of Walnut and Chestnut Streets, Greenvale, New York, which school buiding is owned by BOCES at a maximum cost of $14,900,000 (the “Project”), to be paid for from funds available from past years appropriations to the BOCES Capital Fund.
Vote February 12 11 a.m. to 8 p.m.
Nassau BOCES Administrative Center, Garden City
Alternative Learning Program, Greenvale
Barry Tech, Westbury
Eagle Avenue School, West Hempstead
Rosemary Kennedy Center, Wantagh
Specifically, Nassau BOCES is asking voters to approve an expenditure of up to $14.9 million for the expansion and renovation of our building in Greenvale, which currently houses the Alternative Learning Program (ALP), a high school for teenagers who are academically capable but have difficulty with peer and adult relationships. Classrooms, computer labs and related spaces will be added to accommodate a growing demand for services, especially for youngsters who have autism spectrum disorders, including Asperger’s Syndrome. Not only is enrollment expected to grow by 25 to 30 percent, but these students’ Individual Education Plans (IEPs) legally require smaller class sizes (6:1:1 ratio—six students, one teacher, one aide).
The law requires a county-wide vote to approve such a project. “But it’s important to understand that this renovation will come at no additional cost to local school districts or county taxpayers,” says District Superintendent Dr. James D. Mapes.
Since the referendum is county-wide, residents can vote at any one of the five polling locations. No special registration is necessary; eligible adults will be asked to sign a sheet verifying that they are U.S. citizens, 18 years of age or older, and have lived in Nassau County for at least 30 days.
On the ballot:
Shall the Board of Cooperative Educational Services of Nassau County (“BOCES”) be authorized to demolish portions of, construct additions to and reconstruct, alter, improve, and repair, including original equipment, machinery, apparatus, appurtenances and incidental improvements and expenses in connection therewith, the school building known as Greenvale Center, located at the intersection of Walnut and Chestnut Streets, Greenvale, New York, which school buiding is owned by BOCES at a maximum cost of $14,900,000 (the “Project”), to be paid for from funds available from past years appropriations to the BOCES Capital Fund.
Tuesday, January 29, 2008
UJA-Federation Autism Symposium Tuesday, April 8, 2008
SAVE THE DATE
UJA-Federation Autism SymposiumFrom the Lab to the Field: Applying Research onBest Practices in Community-Based Settings
Organized in collaboration with The Hilibrand Foundation.
Tuesday, April 8, 20088:30 a.m. - 3:30 p.m.UJA-Federation of New YorkSeventh-Floor Conference Center130 East 59th StreetNew York City
Who is the autistic child, and how does he or she behave and look? What are the cognitive and methodological strategies to best enable inclusion of children with autism whenever possible in mainstream settings? How must service modalities for working with children with autism change as children grow into teens, young adults, and adults; and how do environments accommodate these changes? Through a panel discussion, a keynote presentation, and afternoon breakout sessions, we will explore these important questions. Join us for a unique opportunity to hear from leading experts in the field.
The symposium will feature:
Keynote Address by Dr. Susan Folstein, Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University School of Medicine
Dr. Eric Hollander, M.D., Professor of Psychiatry and Director of the Seaver and New York Autism Center of Excellence at the Mount Sinai School of Medicine
Dr. Lynda Geller, Ph.D., Clinical Director of the Asperger Institute at the New York University Child Study Center
Dr. Ami Klin, Ph.D., Harris Associate Professor of Child Psychology and Psychiatry at the Yale Child Study Center
Invitation to follow.
For more information, please contact Alex Roth-Kahn at 1.212.836.1762 or roth-kahna@ujafedny.org.
This symposium is intended as an educational tool only. Some information may not be relevant for all situations and individuals. We urge each individual to retain independent counsel to review and advise regarding their specific needs and requirements.
130 East 59th Street, New York, NY 10022
UJA-Federation Autism SymposiumFrom the Lab to the Field: Applying Research onBest Practices in Community-Based Settings
Organized in collaboration with The Hilibrand Foundation.
Tuesday, April 8, 20088:30 a.m. - 3:30 p.m.UJA-Federation of New YorkSeventh-Floor Conference Center130 East 59th StreetNew York City
Who is the autistic child, and how does he or she behave and look? What are the cognitive and methodological strategies to best enable inclusion of children with autism whenever possible in mainstream settings? How must service modalities for working with children with autism change as children grow into teens, young adults, and adults; and how do environments accommodate these changes? Through a panel discussion, a keynote presentation, and afternoon breakout sessions, we will explore these important questions. Join us for a unique opportunity to hear from leading experts in the field.
The symposium will feature:
Keynote Address by Dr. Susan Folstein, Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University School of Medicine
Dr. Eric Hollander, M.D., Professor of Psychiatry and Director of the Seaver and New York Autism Center of Excellence at the Mount Sinai School of Medicine
Dr. Lynda Geller, Ph.D., Clinical Director of the Asperger Institute at the New York University Child Study Center
Dr. Ami Klin, Ph.D., Harris Associate Professor of Child Psychology and Psychiatry at the Yale Child Study Center
Invitation to follow.
For more information, please contact Alex Roth-Kahn at 1.212.836.1762 or roth-kahna@ujafedny.org.
This symposium is intended as an educational tool only. Some information may not be relevant for all situations and individuals. We urge each individual to retain independent counsel to review and advise regarding their specific needs and requirements.
130 East 59th Street, New York, NY 10022
Pediatricians: New TV show perpetuates myth
CHICAGO, Illinois (AP) -- The nation's largest pediatricians' group on Monday said ABC should cancel the first episode of a new series because it perpetuates the myth that vaccines can cause autism.
Jonny Lee Miller plays "Eli Stone" in the ABC series about a lawyer who has visions.
ABC's new drama, "Eli Stone," debuts on Thursday. It features British actor Jonny Lee Miller as a prophet-like lawyer who in the opening episode argues in court that a flu vaccine made a child autistic. When it is revealed in court that an executive at the fictional vaccine maker didn't allow his own child to get the shot, jurors side with the family, giving them a huge award.
The show's co-creators say they're not anti-vaccine and would be upset if parents chose not to immunize their children after seeing the show.
But, said Dr. Renee R. Jenkins, president of the influential American Academy of Pediatrics, "A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co."
"If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation's children," Jenkins said in a statement.
Autism is a complex disorder featuring repetitive behaviors and poor social interaction and communication skills. Scientists generally believe that genetics plays a role in causing the disorder; a theory that a mercury-based preservative once widely used in childhood vaccines is to blame has been repeatedly discounted in scientific studies.
The academy released the text of a letter Jenkins wrote on Friday, addressed to Anne Sweeney, president of Disney-ABC Television Group. In the letter, Jenkins writes that many viewers "trust the health information presented on fictional television shows, which influences their decisions about health care. "
Jenkins noted that erroneous reports in the United Kingdom linking the measles vaccine to autism prompted a decline in vaccination and the worst outbreak of measles in two decades.
Greg Berlanti, a co-creator of the show, said the episode is fictional but designed "to participate in what is a national conversation" about a controversial subject. He said the boy who plays the autistic child has autism, but that the show's producers have no connection with advocates involved in the autism debate.
"We would be deeply upset" if parents opted against vaccination because of the episode, Berlanti said.Marc Guggenheim, who helped create the show, said the first episode shows how a fictional company covered up a study that raised questions about its product, and that the message is really about "the downside of the corporatization of America."
Jonny Lee Miller plays "Eli Stone" in the ABC series about a lawyer who has visions.
ABC's new drama, "Eli Stone," debuts on Thursday. It features British actor Jonny Lee Miller as a prophet-like lawyer who in the opening episode argues in court that a flu vaccine made a child autistic. When it is revealed in court that an executive at the fictional vaccine maker didn't allow his own child to get the shot, jurors side with the family, giving them a huge award.
The show's co-creators say they're not anti-vaccine and would be upset if parents chose not to immunize their children after seeing the show.
But, said Dr. Renee R. Jenkins, president of the influential American Academy of Pediatrics, "A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co."
"If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation's children," Jenkins said in a statement.
Autism is a complex disorder featuring repetitive behaviors and poor social interaction and communication skills. Scientists generally believe that genetics plays a role in causing the disorder; a theory that a mercury-based preservative once widely used in childhood vaccines is to blame has been repeatedly discounted in scientific studies.
The academy released the text of a letter Jenkins wrote on Friday, addressed to Anne Sweeney, president of Disney-ABC Television Group. In the letter, Jenkins writes that many viewers "trust the health information presented on fictional television shows, which influences their decisions about health care. "
Jenkins noted that erroneous reports in the United Kingdom linking the measles vaccine to autism prompted a decline in vaccination and the worst outbreak of measles in two decades.
Greg Berlanti, a co-creator of the show, said the episode is fictional but designed "to participate in what is a national conversation" about a controversial subject. He said the boy who plays the autistic child has autism, but that the show's producers have no connection with advocates involved in the autism debate.
"We would be deeply upset" if parents opted against vaccination because of the episode, Berlanti said.Marc Guggenheim, who helped create the show, said the first episode shows how a fictional company covered up a study that raised questions about its product, and that the message is really about "the downside of the corporatization of America."
Monday, January 28, 2008
PRAYING WITH LIOR opens in NYC February 1st, limited engagement
The winner of numerous Audience Awards for Best Documentary, called "a crowd-pleasing delight" by Variety, PRAYING WITH LIOR asks whether someone with Down syndrome can be a “spiritual genius.” Many think Lior is close to God -- at least that's what his family and community believe -- though he’s also a burden, a best friend, an inspiration and an embarrassment, depending on who is asked and when. As this moving and entertaining documentary moves to its climax, Lior must pass through the gateway to manhood - his Bar Mitzvah.
Treat yourself to this uplifting portrait of an extraordinary child, his special family, and his inclusive community.
Special Olympics Chairman Timothy Shriver wrote, "I could scarcely contain my emotion."
***Turnout opening weekend determines the length of the run, and whether other cities will open the movie,
so please try to come opening weekend (Feb 1 - 3rd.)
Cinema Village
Runs Feb 1 - 7th
22 E. 12th Street (at University)
Showtimes are at 1,3,5,7,9.
For tickets: www.cinemavillage.com
Discounted group tickets available: nicole@firstrunfeatures.com
To find out more and watch the trailer, check out: www.prayingwithlior.com
Treat yourself to this uplifting portrait of an extraordinary child, his special family, and his inclusive community.
Special Olympics Chairman Timothy Shriver wrote, "I could scarcely contain my emotion."
***Turnout opening weekend determines the length of the run, and whether other cities will open the movie,
so please try to come opening weekend (Feb 1 - 3rd.)
Cinema Village
Runs Feb 1 - 7th
22 E. 12th Street (at University)
Showtimes are at 1,3,5,7,9.
For tickets: www.cinemavillage.com
Discounted group tickets available: nicole@firstrunfeatures.com
To find out more and watch the trailer, check out: www.prayingwithlior.com
Conference February 3, 2008, 9am-2:30pm
Raising Children with Disabilities: Finding Our Way in the Jewish Community
JCC in Manhattan, 334 Amsterdam Ave
February 3, 2008, 9am-2:30pm
Many parents in the Jewish community have asked for more resources, more guidance, more ideas. This conference will focus on the unique challenges and opportunities of raising children with disabilities in the Jewish community.
Keynote speaker will be Rabbi Bradley Artson of Los Angeles, California, Dean of the University of Judaism Rabbinical School and father of an autistic child.
Following the keynote there will be opportunities for parents to engage in conversations around select topics of interest and to hear from leading professionals from synagogues and agencies in our community.
Babysitting is available for $20 per family. Space is limited. Please call Melissa Lader at 646.505.5729 for details or to reserve a spot.
Conference generously funded by UJA-Federation of New York.
JCC in Manhattan, 334 Amsterdam Ave
February 3, 2008, 9am-2:30pm
Many parents in the Jewish community have asked for more resources, more guidance, more ideas. This conference will focus on the unique challenges and opportunities of raising children with disabilities in the Jewish community.
Keynote speaker will be Rabbi Bradley Artson of Los Angeles, California, Dean of the University of Judaism Rabbinical School and father of an autistic child.
Following the keynote there will be opportunities for parents to engage in conversations around select topics of interest and to hear from leading professionals from synagogues and agencies in our community.
Babysitting is available for $20 per family. Space is limited. Please call Melissa Lader at 646.505.5729 for details or to reserve a spot.
Conference generously funded by UJA-Federation of New York.
Horseback riding therapy for autistic children
BY CHRISTINA HERNANDEZ
January 27, 2008
'Do you want to get on the horse?" Taylor Rubin asked Nicholas Griecoduring a recent riding lesson.Nicholas, 9, didn't answer.He was standing in a century- old barn at Lakewood Stables in WestHempstead, brushing Layla, a brown Mexican pony.Nicholas was staring at Layla's brand, his nose nearly touching thehorse's hindquarters, lost in concentration. It's a commoncharacteristic of autism, a developmental disability that causesimpaired communication and unusual behaviors. More than 3,000 school-agechildren on Long Island have been classified as having an autismspectrum disorder, a neurological condition that causes mild to severeimpairment.Nicholas, of Bellmore, was at the stables for a regular riding lesson aspart of its therapeutic program for children with autism. He had beenhaving some difficulties that day.When Rubin, the program's director, asked what color the horse was,Nicholas replied, "OK." He occasionally became frustrated by Rubin'sdirections. But Nicholas had succeeded in learning to brush the horse incircular motions, among other skills."He definitely deserves to ride," Rubin said.At Lakewood Stables, saddling up is not always a right, it's a reward.Improving social skillsThe program, which began lessons last fall, aims to improve behaviors,motor skills and social function, said Alex Jacobson, who owns thestables with Ben Haghani."Riding a horse, for autistic children, is very therapeutic," saidJacobson, who was inspired to start the program after his fiancee's4-year-old cousin, who has autism, visited Lakewood.The riding rings also has a laboratory to study the connection betweenanimals and children. There is no scientific research, according to theNew Jersey-based nonprofit Association for Science in Autism Treatment,to support what workers at Lakewood and other stables say they've seen:Horses can help alleviate autism symptoms. So experts are seeking tolearn more."Is it that the animal is sensitive to the fact that the kid isdifferent?" Anthony Hollander said.Hollander, an Amityville autism specialist and consultant for Lakewood,helped set up the program in which staff members chart the children'sprogress in such areas as language development, ability to takedirection and social interaction by recording data during ridinglessons. His research also is trying to pinpoint why horses and childrenhave an affinity for one another by testing variables that couldinfluence that connection, such as whether the child smells like candyor some other food.Other scientists who have worked with dolphins have found they provokedlittle change in children's behavior.Data analysis is a component of Applied Behavior Analysis, a highlystructured teaching method generally considered by scientists to be themost effective way to teach people with autism.Despite the lack of hard evidence, parents have gravitated to Lakewood'sriding program, which costs $75 for each 30- to 45-minute session,Jacobson said.About 50 people have filled out the 10-page registration packetregarding each rider's health history, behavior and skills, includingmood, speech and toilet training, he said. The forms are used to createa customized data sheet for all riders, who range in age from 2 to 18years.Lessons are overseen by Rubin, who was trained by Hollander and is inthe process of being certified by the North American Riding for theHandicapped Association.Labor-intensive lessonsLessons for a person with autism require several staff members. Duringriding, a handler must stand on each side of the horse while anotherleads the horse around the ring. Someone else records data, such aswhether the child answers a question or responds to directions.Lessons begin with a "desensitization phase," Hollander said, which caninclude touching, brushing and feeding the horse, helping to clean thestables and, possibly, riding.With success, the workload increases. The hope is for the child to oneday leave the small riding ring on stable grounds and take a horse outon a trail.Across Long Island, other stables run similar programs for children withautism.Family Residences and Essential Enterprises, a nonprofit that providesservices for people with autism and other disorders, runs a horse ridingprogram that includes data collection at Saddle Rock Ranch in MiddleIsland, said chief executive Robert Budd.Pal-O-Mine Equestrian in Islandia also offers therapeutic horsebackriding for people with disabilities, including those with autism.At Lakewood Stables, parents say the riding program has had significanteffects on their children's demeanor and use of language."There's a lot of hope," said Cathy Grieco, 43, Nicholas' mother, whosedaughter, Ariana, 10, also began lessons in December. "It's just anotherstep forward for them."Behavior modificationLakewood instructors use a variety of behavior modification strategiesto teach new habits and eliminate undesirable behavior. Among thestrategies is "ABA," which teaches life skills such as reading,counting, conversing and following directions."If they're applying that to horseback riding, I think that's a reallynice idea," said Ellen Woodward of the Cody Center for Autism andDevelopmental Disabilities at Stony Brook University.The method is familiar to Bobby Greengus, 6, whose teachers use ABA whenworking with him at home in Long Beach, at school and during his weeklysessions at Lakewood.Bobby, a small boy with searching eyes, spent several minutes on arecent afternoon wandering the 1.2-acre grounds with Rubin. Holdinghands, Bobby dragged the instructor past the riding ring, stopped to runhis fingers along the side of an abandoned pickup and then wanderedaimlessly into a barn. When Rubin finally focused Bobby and led him over to a horse to brush,the goal was a modest one - three brush strokes before he wandered awayagain. Rubin moved Bobby's hand in circular motions on the horse'sflank. When the horse stomped the ground, Bobby stared at her.Over the half-hour session, Bobby rarely spoke a discernible word. Inworking with him, Rubin used the simplest directives, such as "brush."When Rubin and Bobby fetched his helmet for riding, Bobby refused to putit on.As they stood outside the riding ring, Rubin picked up a leaf and fed itto Layla, who was saddled up and ready to ride. Bobby looked on withinterest. Rubin showed him how to feed Layla, then pointed at a leaf onthe ground a few feet away and asked Bobby to get it. He did, ran backto Layla and held it out for the horse, which gingerly took it.Bobby's father, Todd Greengus, who had been watching the scene, placedthe helmet on his son's head - and this time Bobby didn't protest. Theyput Bobby on the horse's back, and as he rode around the ring, Bobbywaved both hands in the air.With more lessons came more progress, said Rubin and Bobby's mother, KimGreengus.At a lesson a few weeks later, they said, Bobby strung words together onhis own for the first time and built the foundation of a sentence."Ride Layla, please," he said.The horse as rider's therapistAutism is not the only disability with symptoms that seem to be eased byguiding a horse around a riding ring, local and national ridingenthusiasts say.The Christian Fellowship Ranch in Syosset hosts riders with Downsyndrome, cancer, brain injuries, heart conditions, mental disabilitiesand other handicaps, said Madeline Buglione, president of Long IslandRiding for the Handicapped Association, which runs the program."Wherever their weaknesses are," she said, "they work with it to makethem stronger."Riding provides new opportunities for people with disabilities to usetheir bodies, Buglione said. "Someone who's in a motorized wheelchair,"she said, "can be put up on a horse and actually feel like it is towalk."More than 42,000 people with disabilities participate in equine-assistedprograms in the United States and abroad, said Barbara Yost of theDenver-based parent organization North American Riding for theHandicapped Association. At least four Long Island facilities, she said,work with riders with disabilities.Horses are an ideal animal to bond with people who have handicaps, Yostsaid. "They are attuned to emotions," she said. "They have to be,because they're a herd animal."Despite the apparent connection between horses and those withdisabilities, lessons at the ranch in Syosset require significanteffort. Most riders need three handlers per session, Buglione said, oneto lead and one on each side of the horse. People with differentdisabilities require various types of equipment, she said.A special safety stirrup, which can break away if the rider falls, isused for those with multiple sclerosis, Buglione said. Riders withvisual impairments learn to steer the horse by listening to a bell rungby an instructor.Most lessons include exercises in physical therapy, Buglione said. Forexample, to teach balance, riders try to keep a beanbag from falling offthe top of their helmet.People with certain conditions, like severe cerebral palsy and severespina bifida, might not benefit from horse therapy, Buglione said.Potential riders with disabilities, she said, should be evaluated by adoctor or physical therapist.Although goals differ for each person, Buglione said instructors hopethe students will one day ride on their own. "Some can," she said. "Somecan't." - CHRISTINA HERNANDEZ
January 27, 2008
'Do you want to get on the horse?" Taylor Rubin asked Nicholas Griecoduring a recent riding lesson.Nicholas, 9, didn't answer.He was standing in a century- old barn at Lakewood Stables in WestHempstead, brushing Layla, a brown Mexican pony.Nicholas was staring at Layla's brand, his nose nearly touching thehorse's hindquarters, lost in concentration. It's a commoncharacteristic of autism, a developmental disability that causesimpaired communication and unusual behaviors. More than 3,000 school-agechildren on Long Island have been classified as having an autismspectrum disorder, a neurological condition that causes mild to severeimpairment.Nicholas, of Bellmore, was at the stables for a regular riding lesson aspart of its therapeutic program for children with autism. He had beenhaving some difficulties that day.When Rubin, the program's director, asked what color the horse was,Nicholas replied, "OK." He occasionally became frustrated by Rubin'sdirections. But Nicholas had succeeded in learning to brush the horse incircular motions, among other skills."He definitely deserves to ride," Rubin said.At Lakewood Stables, saddling up is not always a right, it's a reward.Improving social skillsThe program, which began lessons last fall, aims to improve behaviors,motor skills and social function, said Alex Jacobson, who owns thestables with Ben Haghani."Riding a horse, for autistic children, is very therapeutic," saidJacobson, who was inspired to start the program after his fiancee's4-year-old cousin, who has autism, visited Lakewood.The riding rings also has a laboratory to study the connection betweenanimals and children. There is no scientific research, according to theNew Jersey-based nonprofit Association for Science in Autism Treatment,to support what workers at Lakewood and other stables say they've seen:Horses can help alleviate autism symptoms. So experts are seeking tolearn more."Is it that the animal is sensitive to the fact that the kid isdifferent?" Anthony Hollander said.Hollander, an Amityville autism specialist and consultant for Lakewood,helped set up the program in which staff members chart the children'sprogress in such areas as language development, ability to takedirection and social interaction by recording data during ridinglessons. His research also is trying to pinpoint why horses and childrenhave an affinity for one another by testing variables that couldinfluence that connection, such as whether the child smells like candyor some other food.Other scientists who have worked with dolphins have found they provokedlittle change in children's behavior.Data analysis is a component of Applied Behavior Analysis, a highlystructured teaching method generally considered by scientists to be themost effective way to teach people with autism.Despite the lack of hard evidence, parents have gravitated to Lakewood'sriding program, which costs $75 for each 30- to 45-minute session,Jacobson said.About 50 people have filled out the 10-page registration packetregarding each rider's health history, behavior and skills, includingmood, speech and toilet training, he said. The forms are used to createa customized data sheet for all riders, who range in age from 2 to 18years.Lessons are overseen by Rubin, who was trained by Hollander and is inthe process of being certified by the North American Riding for theHandicapped Association.Labor-intensive lessonsLessons for a person with autism require several staff members. Duringriding, a handler must stand on each side of the horse while anotherleads the horse around the ring. Someone else records data, such aswhether the child answers a question or responds to directions.Lessons begin with a "desensitization phase," Hollander said, which caninclude touching, brushing and feeding the horse, helping to clean thestables and, possibly, riding.With success, the workload increases. The hope is for the child to oneday leave the small riding ring on stable grounds and take a horse outon a trail.Across Long Island, other stables run similar programs for children withautism.Family Residences and Essential Enterprises, a nonprofit that providesservices for people with autism and other disorders, runs a horse ridingprogram that includes data collection at Saddle Rock Ranch in MiddleIsland, said chief executive Robert Budd.Pal-O-Mine Equestrian in Islandia also offers therapeutic horsebackriding for people with disabilities, including those with autism.At Lakewood Stables, parents say the riding program has had significanteffects on their children's demeanor and use of language."There's a lot of hope," said Cathy Grieco, 43, Nicholas' mother, whosedaughter, Ariana, 10, also began lessons in December. "It's just anotherstep forward for them."Behavior modificationLakewood instructors use a variety of behavior modification strategiesto teach new habits and eliminate undesirable behavior. Among thestrategies is "ABA," which teaches life skills such as reading,counting, conversing and following directions."If they're applying that to horseback riding, I think that's a reallynice idea," said Ellen Woodward of the Cody Center for Autism andDevelopmental Disabilities at Stony Brook University.The method is familiar to Bobby Greengus, 6, whose teachers use ABA whenworking with him at home in Long Beach, at school and during his weeklysessions at Lakewood.Bobby, a small boy with searching eyes, spent several minutes on arecent afternoon wandering the 1.2-acre grounds with Rubin. Holdinghands, Bobby dragged the instructor past the riding ring, stopped to runhis fingers along the side of an abandoned pickup and then wanderedaimlessly into a barn. When Rubin finally focused Bobby and led him over to a horse to brush,the goal was a modest one - three brush strokes before he wandered awayagain. Rubin moved Bobby's hand in circular motions on the horse'sflank. When the horse stomped the ground, Bobby stared at her.Over the half-hour session, Bobby rarely spoke a discernible word. Inworking with him, Rubin used the simplest directives, such as "brush."When Rubin and Bobby fetched his helmet for riding, Bobby refused to putit on.As they stood outside the riding ring, Rubin picked up a leaf and fed itto Layla, who was saddled up and ready to ride. Bobby looked on withinterest. Rubin showed him how to feed Layla, then pointed at a leaf onthe ground a few feet away and asked Bobby to get it. He did, ran backto Layla and held it out for the horse, which gingerly took it.Bobby's father, Todd Greengus, who had been watching the scene, placedthe helmet on his son's head - and this time Bobby didn't protest. Theyput Bobby on the horse's back, and as he rode around the ring, Bobbywaved both hands in the air.With more lessons came more progress, said Rubin and Bobby's mother, KimGreengus.At a lesson a few weeks later, they said, Bobby strung words together onhis own for the first time and built the foundation of a sentence."Ride Layla, please," he said.The horse as rider's therapistAutism is not the only disability with symptoms that seem to be eased byguiding a horse around a riding ring, local and national ridingenthusiasts say.The Christian Fellowship Ranch in Syosset hosts riders with Downsyndrome, cancer, brain injuries, heart conditions, mental disabilitiesand other handicaps, said Madeline Buglione, president of Long IslandRiding for the Handicapped Association, which runs the program."Wherever their weaknesses are," she said, "they work with it to makethem stronger."Riding provides new opportunities for people with disabilities to usetheir bodies, Buglione said. "Someone who's in a motorized wheelchair,"she said, "can be put up on a horse and actually feel like it is towalk."More than 42,000 people with disabilities participate in equine-assistedprograms in the United States and abroad, said Barbara Yost of theDenver-based parent organization North American Riding for theHandicapped Association. At least four Long Island facilities, she said,work with riders with disabilities.Horses are an ideal animal to bond with people who have handicaps, Yostsaid. "They are attuned to emotions," she said. "They have to be,because they're a herd animal."Despite the apparent connection between horses and those withdisabilities, lessons at the ranch in Syosset require significanteffort. Most riders need three handlers per session, Buglione said, oneto lead and one on each side of the horse. People with differentdisabilities require various types of equipment, she said.A special safety stirrup, which can break away if the rider falls, isused for those with multiple sclerosis, Buglione said. Riders withvisual impairments learn to steer the horse by listening to a bell rungby an instructor.Most lessons include exercises in physical therapy, Buglione said. Forexample, to teach balance, riders try to keep a beanbag from falling offthe top of their helmet.People with certain conditions, like severe cerebral palsy and severespina bifida, might not benefit from horse therapy, Buglione said.Potential riders with disabilities, she said, should be evaluated by adoctor or physical therapist.Although goals differ for each person, Buglione said instructors hopethe students will one day ride on their own. "Some can," she said. "Somecan't." - CHRISTINA HERNANDEZ
Spitzer's preschool plan could cause rifts in LI
BY JOHN HILDEBRAND.john.hildebrand@newsday.com January 26, 2008
A proposal by Gov. Eliot Spitzer to shift soaring costs of preschoolspecial education is creating a potential split between Long Island'scounties, which would save money, and local school districts, whichwould face higher expenses.Controlling costs of special education for preschoolers ranks as a majorpriority for both Nassau and Suffolk counties, where spending on suchservices will total more than $200 million this year. Costs have jumpedin recent years, as thousands of additional children ages 3 to 5 havebeen diagnosed with autism and other disabilities."There's no connection between the counties and special education, sowhy are we paying this outlandish bill?" said Suffolk County ExecutiveSteve Levy. He added that he was "elated" by the idea of a cap, butcautioned that many details remain unsettled.Under Spitzer's plan, outlined earlier this week in his annual budgetproposal, growth in counties' share of preschool special-educationspending would be capped at 4 percent next year. Albany would pick upany additional costs, estimated at $20 million statewide.In return, costs of medical evaluations for such children, along withpreschool administrative expenses, would be shifted to local schooldistricts. This would save an estimated $46 million for the state, whichcurrently splits those expenses with counties.Spitzer aides contend the shift to school districts would make sense,because districts already are responsible for deciding how much therapyand instruction is provided to preschoolers with disabilities. But the governor's proposal has drawn objections from local schoolofficials in Nassau and Suffolk, who say the state has no businessimposing extra costs on schools that are under increasing pressure tocurb property taxes.School administrators add that, while they would like to see thecounties save money, this shouldn't be done at their expense."We have struggled with this, because we think it's somewhatdisingenuous of the governor to say, on the one hand, that he wants tocap property taxes, and on the other hand, pass on extra costs to schooldistricts," said Wendell Chu, vice president of the Suffolk CountySchool Superintendents Association. Chu also serves as superintendent ofFire Island schools. That criticism was echoed Friday at a Mineola news conference attendedby a half-dozen state lawmakers, who attacked both the governor's planfor shifting preschool costs, and a proposed elimination of $8.6 millionin state financial aid for special-education programs serving theIsland's older students. Speakers included Republicans and Democrats - a sign that Spitzer's plancould face an uphill struggle in winning legislative approval."They're advertising this as a tax cut," said State Assemb. HarveyWeisenberg (D-Long Beach). "Shifting money isn't going to be a tax cut."
A proposal by Gov. Eliot Spitzer to shift soaring costs of preschoolspecial education is creating a potential split between Long Island'scounties, which would save money, and local school districts, whichwould face higher expenses.Controlling costs of special education for preschoolers ranks as a majorpriority for both Nassau and Suffolk counties, where spending on suchservices will total more than $200 million this year. Costs have jumpedin recent years, as thousands of additional children ages 3 to 5 havebeen diagnosed with autism and other disabilities."There's no connection between the counties and special education, sowhy are we paying this outlandish bill?" said Suffolk County ExecutiveSteve Levy. He added that he was "elated" by the idea of a cap, butcautioned that many details remain unsettled.Under Spitzer's plan, outlined earlier this week in his annual budgetproposal, growth in counties' share of preschool special-educationspending would be capped at 4 percent next year. Albany would pick upany additional costs, estimated at $20 million statewide.In return, costs of medical evaluations for such children, along withpreschool administrative expenses, would be shifted to local schooldistricts. This would save an estimated $46 million for the state, whichcurrently splits those expenses with counties.Spitzer aides contend the shift to school districts would make sense,because districts already are responsible for deciding how much therapyand instruction is provided to preschoolers with disabilities. But the governor's proposal has drawn objections from local schoolofficials in Nassau and Suffolk, who say the state has no businessimposing extra costs on schools that are under increasing pressure tocurb property taxes.School administrators add that, while they would like to see thecounties save money, this shouldn't be done at their expense."We have struggled with this, because we think it's somewhatdisingenuous of the governor to say, on the one hand, that he wants tocap property taxes, and on the other hand, pass on extra costs to schooldistricts," said Wendell Chu, vice president of the Suffolk CountySchool Superintendents Association. Chu also serves as superintendent ofFire Island schools. That criticism was echoed Friday at a Mineola news conference attendedby a half-dozen state lawmakers, who attacked both the governor's planfor shifting preschool costs, and a proposed elimination of $8.6 millionin state financial aid for special-education programs serving theIsland's older students. Speakers included Republicans and Democrats - a sign that Spitzer's plancould face an uphill struggle in winning legislative approval."They're advertising this as a tax cut," said State Assemb. HarveyWeisenberg (D-Long Beach). "Shifting money isn't going to be a tax cut."
New guides coming out on sleep disorders
Pediatric Sleep Disorders: Therapist Guide (Treatments That Work) (Paperback)http://www.amazon.com/Pediatric-Sleep-Disorders-Therapist-Treatments/dp/0195329473/
Pediatric Sleep Disorders: Parent Workbook (Treatments That Work) (Paperback)http://www.amazon.com/Pediatric-Sleep-Disorders-Workbook-Treatments/dp/0195329481/
Sleep Better!: A Guide to Improving Sleep for Children With Special Needs (Paperback)http://www.amazon.com/Sleep-Better-Improving-Children-Special/dp/1557663157/
"The two new books differ from my Sleep Better book in a few ways. The Sleep Better book was written exclusively for parents who wanted more information about sleep and its problems among children with special needs. It is essentially a self-help book. The two new books allow clinicians or therapists to assist parents with a step-by-step process for fully assessing and treating sleep problems – with a Therapist Guide for the clinician and a Workbook for the parent. Because most clinicians do not have extensive experience treating sleep problems, I wrote the guide to help them. It is also more up-to-date, reflecting changes over the years since the first book was published. Bottom line, most families can do simple interventions by themselves using the Sleep Better book. For more challenging difficulties I would recommend working with a therapist and using the protocol outlined in the two new books."
Pediatric Sleep Disorders: Parent Workbook (Treatments That Work) (Paperback)http://www.amazon.com/Pediatric-Sleep-Disorders-Workbook-Treatments/dp/0195329481/
Sleep Better!: A Guide to Improving Sleep for Children With Special Needs (Paperback)http://www.amazon.com/Sleep-Better-Improving-Children-Special/dp/1557663157/
"The two new books differ from my Sleep Better book in a few ways. The Sleep Better book was written exclusively for parents who wanted more information about sleep and its problems among children with special needs. It is essentially a self-help book. The two new books allow clinicians or therapists to assist parents with a step-by-step process for fully assessing and treating sleep problems – with a Therapist Guide for the clinician and a Workbook for the parent. Because most clinicians do not have extensive experience treating sleep problems, I wrote the guide to help them. It is also more up-to-date, reflecting changes over the years since the first book was published. Bottom line, most families can do simple interventions by themselves using the Sleep Better book. For more challenging difficulties I would recommend working with a therapist and using the protocol outlined in the two new books."
Skates, Sticks and a Little Support
By MICHAEL WINERIP
Published: January 20, 2008
GARDEN CITY
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IT was Saturday night, so Brian Collins and his 13-year-old son, Danny, were getting ready for Danny’s hockey game. They opened Danny’s hockey bag to make sure everything was packed. For Christmas, Santa had brought Danny new hockey suspenders, new pads, a new helmet and new skates, and they checked to be sure everything was inside. Last practice, Danny forgot his socks and had to wear Matt Pope’s extras. “Where’s your white jersey?” Mr. Collins asked, and Danny held it up. “No. 5,” Danny said.
“He knows everyone’s number,” said Mr. Collins, who was trying to move things along; Danny has Down syndrome, and getting him dressed in all the equipment at the rink can be slow going. Mr. Collins reminded him they had to be on the ice in 45 minutes.
“Brian Irwin, 45,” Danny said.
Danny’s Mom, Jenny, came into the kitchen and said, “Fill up your water bottle.”
“I want Coke,” Danny said.
“No Coke,” said his dad. “Water in the water bottle.”
Danny held the empty bottle out to be filled and his mom said: “You can do it yourself. You’re 13.”
“Thirteen, Joe Burdi,” Danny said.
When Danny was born, a relative who had a child with cerebral palsy said something that made things easier for Mr. Collins. She said no matter how many years passed, when Christmas came around again, Danny would still believe in Santa Claus, and Mr. Collins thought, “I can live with that.”
He is reminded of this daily. Routine is important to children with Down syndrome, and every night before Danny goes to bed, he insists that his dad read him “The Night Before Christmas” — even in July.
Mr. Collins started the van, and Danny immediately began grousing. “I know, I know, hold on...” Mr. Collins said. “We have to put on ‘High School Musical,’ ” he explained, slipping in the CD. When “Start of Something New” came on, Danny began singing, not quite to himself, and he sang all the way to the rink.
Mr. Collins, a civil engineer, coaches his younger son, Michael, in football and basketball, but knew nothing about hockey. Hockey was Danny’s idea. Four years ago, Danny brought home a flier from school announcing the formation of the Long Island Blues, a team for kids with disabilities like Down syndrome, autism, attention deficit disorder, Tourette’s syndrome and cerebral palsy. Ms. Collins was going to throw it away, but Danny said: “No! Hockey me.”
“You don’t skate,” said Mr. Collins.
“Hockey me,” Danny said again, and once he fixates on an idea, he’s tough to dissuade, as anyone knows who has ever tried driving him anyplace without playing “High School Musical.”
So hockey Danny it was. They went to the first practice with a pair of rented skates and a bike helmet and were one of eight families that year. Today there are 55 players, as young as 5 and as old as 25, mirroring the nationwide growth in the American Special Hockey Association. In the last four years, the association has gone from a dozen teams to more than 50, including teams in Westchester (New York Raptors), Connecticut (Southern Connecticut Storm) and New Jersey (Daredevils).
“We look like no other hockey you’ve ever seen,” said Jon Schwartz, who is the national association vice president and coach of the Daredevils — Long Island’s opponent at Cantiague Park in Hicksville last weekend. Conventional rules like offsides and icing are not enforced. Lines are pitted against each other according to ability, and sometimes 5-year-old Shane Sullivan plays beside Max Graney and Alex Butler, who both have beards.
As in regular hockey, there are generally six players on the ice, but there can also be a few extra “floaters” who just skate in circles. Nicholas Russo, 10, the son of the Blues’ head coach, Mike Russo, can’t skate on his own, so Kathleen Gallagher, a parent, leads him around the ice, staying as far from the puck as possible.
Still, it is unmistakably hockey, with players skating up and down, frenzied banging of the boards when a goal is scored, and uniforms that are every bit as fancy as the pros’. Though many of the players have clear disabilities and have trouble walking on land, on ice they seem to float.
Bill Ackerman, a Blues assistant coach whose 14-year-old daughter, Rebecca, has Asperger’s syndrome and is a member of the team, believes the uniforms and equipment play a crucial role: the helmets focus the players and block out distractions; the sticks are like third legs, providing extra stability; there’s so much padding, falling doesn’t hurt; and when they pull down their masks to play, every one of them looks like the Islanders’ Mike Comrie.
Coaching the Blues has its subtleties. As one line came off the ice, Mr. Ackerman made sure a boy with Tourette’s wasn’t sitting by the girls on the bench. “Things come out of his mouth — I don’t want them to hear it,” he said.
It took Danny three seasons to master skating, and now, when he makes his way down the ice to the offensive end, he’s so happy to be there, he doesn’t want to leave. “He loves being near the goal,” says his dad. “When we sub, it’s hard to get him off the ice.”
The parents appreciate that so many other adults get to know and understand their kids. At one point, Danny skated over to the bench and yelled, “Outback!” Danny slurs his words and can be hard to understand, but Neil Robbins, a coach, knew exactly what Danny meant. “He wants to go out to eat,” he said.
“Danny, the game’s not even half over,” Mr. Robbins told him. “Get back out there.”
When he had skated off, Mr. Robbins said, “Danny’s a big French-fry guy.”
After the game, the small dressing room was crammed with players and their fathers, who were helping them take off their equipment and get back into their street clothes. Usually on the way home the Collinses go to the drive-through at McDonald’s and order fries, but tonight there was a team party, and Danny ate pizza — he’s a big pepperoni guy, too — rubbing his hands in delight before each bite.
In the van, he groused until Mr. Collins put on “High School Musical” and then sang out loud to himself the whole way home. Though it was 10 by the time they got back to Garden City, well past Danny’s bedtime, Mr. Collins read him “The Night Before Christmas,” said good night and then, as he always does, sat in the dark watching until his son fell asleep.
E-mail: parenting@nytimes.com
Published: January 20, 2008
GARDEN CITY
Skip to next paragraph
Multimedia
Slide Show
Skating to the Goal
In the Region
Long Island, Westchester, Connecticut and New JerseyGo to Complete Coverage »
IT was Saturday night, so Brian Collins and his 13-year-old son, Danny, were getting ready for Danny’s hockey game. They opened Danny’s hockey bag to make sure everything was packed. For Christmas, Santa had brought Danny new hockey suspenders, new pads, a new helmet and new skates, and they checked to be sure everything was inside. Last practice, Danny forgot his socks and had to wear Matt Pope’s extras. “Where’s your white jersey?” Mr. Collins asked, and Danny held it up. “No. 5,” Danny said.
“He knows everyone’s number,” said Mr. Collins, who was trying to move things along; Danny has Down syndrome, and getting him dressed in all the equipment at the rink can be slow going. Mr. Collins reminded him they had to be on the ice in 45 minutes.
“Brian Irwin, 45,” Danny said.
Danny’s Mom, Jenny, came into the kitchen and said, “Fill up your water bottle.”
“I want Coke,” Danny said.
“No Coke,” said his dad. “Water in the water bottle.”
Danny held the empty bottle out to be filled and his mom said: “You can do it yourself. You’re 13.”
“Thirteen, Joe Burdi,” Danny said.
When Danny was born, a relative who had a child with cerebral palsy said something that made things easier for Mr. Collins. She said no matter how many years passed, when Christmas came around again, Danny would still believe in Santa Claus, and Mr. Collins thought, “I can live with that.”
He is reminded of this daily. Routine is important to children with Down syndrome, and every night before Danny goes to bed, he insists that his dad read him “The Night Before Christmas” — even in July.
Mr. Collins started the van, and Danny immediately began grousing. “I know, I know, hold on...” Mr. Collins said. “We have to put on ‘High School Musical,’ ” he explained, slipping in the CD. When “Start of Something New” came on, Danny began singing, not quite to himself, and he sang all the way to the rink.
Mr. Collins, a civil engineer, coaches his younger son, Michael, in football and basketball, but knew nothing about hockey. Hockey was Danny’s idea. Four years ago, Danny brought home a flier from school announcing the formation of the Long Island Blues, a team for kids with disabilities like Down syndrome, autism, attention deficit disorder, Tourette’s syndrome and cerebral palsy. Ms. Collins was going to throw it away, but Danny said: “No! Hockey me.”
“You don’t skate,” said Mr. Collins.
“Hockey me,” Danny said again, and once he fixates on an idea, he’s tough to dissuade, as anyone knows who has ever tried driving him anyplace without playing “High School Musical.”
So hockey Danny it was. They went to the first practice with a pair of rented skates and a bike helmet and were one of eight families that year. Today there are 55 players, as young as 5 and as old as 25, mirroring the nationwide growth in the American Special Hockey Association. In the last four years, the association has gone from a dozen teams to more than 50, including teams in Westchester (New York Raptors), Connecticut (Southern Connecticut Storm) and New Jersey (Daredevils).
“We look like no other hockey you’ve ever seen,” said Jon Schwartz, who is the national association vice president and coach of the Daredevils — Long Island’s opponent at Cantiague Park in Hicksville last weekend. Conventional rules like offsides and icing are not enforced. Lines are pitted against each other according to ability, and sometimes 5-year-old Shane Sullivan plays beside Max Graney and Alex Butler, who both have beards.
As in regular hockey, there are generally six players on the ice, but there can also be a few extra “floaters” who just skate in circles. Nicholas Russo, 10, the son of the Blues’ head coach, Mike Russo, can’t skate on his own, so Kathleen Gallagher, a parent, leads him around the ice, staying as far from the puck as possible.
Still, it is unmistakably hockey, with players skating up and down, frenzied banging of the boards when a goal is scored, and uniforms that are every bit as fancy as the pros’. Though many of the players have clear disabilities and have trouble walking on land, on ice they seem to float.
Bill Ackerman, a Blues assistant coach whose 14-year-old daughter, Rebecca, has Asperger’s syndrome and is a member of the team, believes the uniforms and equipment play a crucial role: the helmets focus the players and block out distractions; the sticks are like third legs, providing extra stability; there’s so much padding, falling doesn’t hurt; and when they pull down their masks to play, every one of them looks like the Islanders’ Mike Comrie.
Coaching the Blues has its subtleties. As one line came off the ice, Mr. Ackerman made sure a boy with Tourette’s wasn’t sitting by the girls on the bench. “Things come out of his mouth — I don’t want them to hear it,” he said.
It took Danny three seasons to master skating, and now, when he makes his way down the ice to the offensive end, he’s so happy to be there, he doesn’t want to leave. “He loves being near the goal,” says his dad. “When we sub, it’s hard to get him off the ice.”
The parents appreciate that so many other adults get to know and understand their kids. At one point, Danny skated over to the bench and yelled, “Outback!” Danny slurs his words and can be hard to understand, but Neil Robbins, a coach, knew exactly what Danny meant. “He wants to go out to eat,” he said.
“Danny, the game’s not even half over,” Mr. Robbins told him. “Get back out there.”
When he had skated off, Mr. Robbins said, “Danny’s a big French-fry guy.”
After the game, the small dressing room was crammed with players and their fathers, who were helping them take off their equipment and get back into their street clothes. Usually on the way home the Collinses go to the drive-through at McDonald’s and order fries, but tonight there was a team party, and Danny ate pizza — he’s a big pepperoni guy, too — rubbing his hands in delight before each bite.
In the van, he groused until Mr. Collins put on “High School Musical” and then sang out loud to himself the whole way home. Though it was 10 by the time they got back to Garden City, well past Danny’s bedtime, Mr. Collins read him “The Night Before Christmas,” said good night and then, as he always does, sat in the dark watching until his son fell asleep.
E-mail: parenting@nytimes.com
Tuesday, January 15, 2008
1ST ANNUAL TECHNOLOGY SCHOOL FAIR
LONG ISLAND TRANSITION COORDINATION SITE1ST ANNUAL TECHNOLOGY SCHOOL FAIR
**********************************************************************
Date: February 1, 2008
Location: Sherwood Corporate Center, Andrea Rd, Holbrook, NY 11741
Time: 9:00am-1:00pm
The fair is open to both general and special education students. **********************************************************************
The goal of the fair is to provide students with a career exploration experience and inform them about alternatives to post secondary two or four year colleges. The information gathered at the fair can be used in the creation of the IEP. Specifically, it can be included in the statements written about the students' expressed interests and preferences as it relates to Transition from school to post school. This information will also help the CSE and the counselors from VESID in the creation of the Individual Plan for Employment or IPE. Over 15 schools will be in attendance and will cover careers that span from Barbering and Spa Services to Automotive and Diesel Repair. Representatives from VESID, Suffolk County Department of Labor, the Suffolk County Department of Civil Service and the Long Island Regional Transition Site will also be in attendance.
**********************************************************************
Date: February 1, 2008
Location: Sherwood Corporate Center, Andrea Rd, Holbrook, NY 11741
Time: 9:00am-1:00pm
The fair is open to both general and special education students. **********************************************************************
The goal of the fair is to provide students with a career exploration experience and inform them about alternatives to post secondary two or four year colleges. The information gathered at the fair can be used in the creation of the IEP. Specifically, it can be included in the statements written about the students' expressed interests and preferences as it relates to Transition from school to post school. This information will also help the CSE and the counselors from VESID in the creation of the Individual Plan for Employment or IPE. Over 15 schools will be in attendance and will cover careers that span from Barbering and Spa Services to Automotive and Diesel Repair. Representatives from VESID, Suffolk County Department of Labor, the Suffolk County Department of Civil Service and the Long Island Regional Transition Site will also be in attendance.
Monday, January 14, 2008
Are expectations TOO HIGH?
By LAURIE HIGGINSCONTRIBUTING WRITERJanuary 13, 2008For most of us, it seems only natural to want our children to haveperfect lives - or at least lives better than our own. This is theAmerican dream, after all.But some people question whether that has lately become too much of afocus. With messages like "Be all that you can be" and "How to succeed?Try hard enough" comes the subtle pressure to be perfect.Not so perfectFamous and influential people who succeeded with learning disabilitiesor mental illness:* Abraham Lincoln - depression* Winston Churchill - bipolar disorder* Charles Dickens - depression* Whoopi Goldberg - learning disabilities* Mike Wallace - depression* Jay Leno - learning disabilities* Cher - learning disabilities* Patty Duke - bipolar disorder* Charles Schwab - learning disabilities * Ludwig van Beethoven - bipolar disorderSource: "Shut Up About Your Perfect Kid!" by Gina Gallagher and PatriciaKonjoianAnd if you or your children aren't perfect, you'd better at least fakeit.That's easier for some of us to do than others.Few people know that better than the parent of a child with a disabilityor mental illness. Massachusetts sisters Gina (Terrasi) Gallagher andPatricia (Terrasi) Konjoian faced that issue head on, deciding to stickup for their less-than-perfect kids and fight back against ourperfection-crazed society. The result: last year's book "Shut Up About... Your Perfect Kid! The Movement of 'Imperfection.'"Gallagher is the mother of two, including 12-year-old Katie, who hasAsperger's syndrome, a neurological condition that is a form of autism.Konjoian is a mother of three whose 14-year-old daughter, Jennifer, hasbipolar disorder, a mental illness characterized by alternating episodesof mania and depression. Chapters in the book, which they describe as"the best medicine for parents of 'imperfect' kids without the scaryside effects," include "Anything Your Kid Can Do, Mine Can DoDifferently" with such subtitles as "Why wasn't there a lifeguard in ourfamily gene pool?"Both admit to having hard days or even weeks. But rather than sinkinginto despair, they decided to use their senses of humor, which have comein handy for parenting, to write the book."The message we get all the time (from other parents with 'imperfect'children) is if you don't laugh, you're going to cry," Gallagher, wholives in Marlborough, explains in a conference-call telephone interview."It's far healthier to laugh. And in no way are we laughing at our kids.It's just I think autistic children in general are very funny. Thethings they comment on, the way they look at the world, is just sounique and fresh and interesting."The book - with a "Shut Up" title considered shocking enough that thesuperintendent of the (intentionally unnamed) school district nearAndover, where Konjoian lives, will not allow them to speak on schoolproperty - is designed to show the reader how to get past the label thatchildren who are different might have. Instead, their stories and thoseof other families they have met along the way, show that the childrenshould be seen as unique individuals whose accomplishments are plentyworthy of pride.For all parentsIt is a message that resonates for all parents, actually, because, ifwe're honest, we have all had moments when our kids have disappointed usor not lived up to our expectations. It could be a dad who was the starquarterback in high school with a son who would rather play the violin,or a mom who loves shopping sitting in the car tapping the horn to gether skinned-knee daughter out of the tree and out to the mall.Carol Nickerson of Chatham, a licensed social worker, says parenting canbe challenging for many reasons, and humor and honesty are helpful indealing with the inherent frustrations of the job. A lot of parents arereluctant to admit, even to themselves, that their kids aren't perfect,she says."I've found in general that people are kind of reluctant to say thatthey're disappointed. People are hesitant to say, 'Oh my gosh, Icouldn't stand my kid today,'" Nickerson says. "I feel it's reallyimportant to be able to say, 'You know, sometimes I daydream about nothaving kids.' Those are all really normal thoughts and feelings. Itdoesn't mean you shouldn't have kids or are not good parents. It doesn'tmean we don't love our children."Another issue that Nickerson has noticed in her career working withfamilies is how often we judge our own parenting based on how our kidsturn out. She has found that families with special-needs children areeven more vulnerable to these feelings, even if the special need isgenetic and something they had no control over.Konjoian says she certainly felt that guilt. For her, finally getting adiagnosis of bipolar disorder for her daughter was a huge relief."As difficult as it was to hear that my child had a serious mentalillness, at the same time it was like, thank you. Thank you. This isn'tanything that I did wrong," she says.Emotional spongesSince the book was published, Gallagher and Konjoian have traveled allover the state and even other parts of the country giving talks aboutraising "imperfect" children. Audiences are responding to the messagenot only because of the humor, but also because being honest about theirkids and their feelings can be liberating for the authors and for theiraudience."People are put very at ease by our message, and not only are theytalking about their 'imperfect children,' but they're able to laugh atthemselves, which is great," Konjoian says.Brewster therapist Pat Gubbins, father of four, says the pressure to beperfect is unhealthy for children and can create anxiety disorders."Our kids are emotional sponges. I think if you put that kind ofpressure - that it's not OK who you are, it's what we need you to be -the kids hear that loud and clear," he says. "This emotional stuff -that's the bath that they're living in. So if you poison the water, evenif you do it in subtle ways, they're going to react really strongly."In Gubbins' opinion, a child-centric, perfection-crazed society is nothealthy for anyone."Who says getting into the best college is what it's all about? There'sso much pressure, but if you get in the best college, then do you haveto get the best job? Then do you have to make the most money and workthe most hours? That's the key to unhappiness," he says.The bottom line for Gallagher and Konjoian is that they hope parentswill feel less alone in their struggles and accept their children,imperfections and all."We're just asking parents to not judge their children by society'sridiculous standards or even by their own standards, but just love yourchildren for who they are," Gallagher says.Consider the childHow to know if you're pushing your kids too hard to perform:Social worker Carol Nickerson says some kids need a little push fromtheir parents to help them do as well as they can, but others do betterif parents back off. The key to finding the right balance is to considerthe uniqueness of your own child. Points to consider:* What is your child's temperament? * What is your child's learning style? * What have your child's life experiences been? * How can you tell when your child is feeling stressed out?
New Genetic Link To Autism Discovered By Studying Speech
ScienceDaily (Jan. 11, 2008) — UCLA scientists have used language onset -- the age when a child speaks his first word -- as a tool for identifying a new gene linked to autism. The team also discovered that the gene is most active in brain regions involved with language and thought. Interestingly, evidence for the genetic link came from the DNA of families with autistic boys, not those with autistic girls.
See also:
Health & Medicine
Children's Health
Birth Defects
Genes
Mind & Brain
Autism
Child Development
Language Acquisition
Reference
Autistic spectrum
Gluten-free, casein-free diet
Rett syndrome
Huntington's disease
The American Journal of Human Genetics publishes the findings in its Jan. 10 online edition, which also features two studies from research teams at Yale and Johns Hopkins that used different methods that pinpointed the same gene. The coincidence suggests that the gene, called contactin-associated protein-like 2 (CNTNAP2), likely plays a key role in the development of autism.
"This gene not only may predispose children to autism," said Dr. Daniel Geschwind, principal investigator and Gordon and Virginia MacDonald Distinguished Professor of Human Genetics at the David Geffen School of Medicine. "It also may influence the development of brain structures involved in language, providing a tangible link between genes, the brain and behavior."
Children normally utter their first word by age 1. Children with autism, however, can be speech-delayed by many months or even years. Some never speak language at all. Late language onset is a symptom shared by most children with autism.
In an earlier study, the UCLA investigators studied the DNA of 291 families nationwide who had donated blood samples to the Los Angeles-based Autism Genetic Resource Exchange. Each family had at least one autistic child; youngsters who had never spoken were excluded. The findings connected a specific region of Chromosome 7, called 7q35, to autism.
In the current study, the researchers scrutinized every gene in the 7q35 region using DNA samples from 172 families. They identified four promising genes; one of the candidates was CNTNAP2.
To verify their findings, the scientists conducted a second test on a new group of 304 families. The CNTNAP2 gene showed up consistently, confirming its implication in language development.
In a second approach, the researchers examined CNTNAP2's presence in early brain tissue and discovered that the gene was most active in developing brain structures involved in language and thought.
Postdoctoral fellow Brett Abrahams, who led this part of the research, explains the finding's significance by comparing the brain to a house.
"We know that different rooms in houses serve different purposes," said Abrahams. "For example, if an item only appears in the kitchen, it makes sense to assume it's involved in cooking. Or if we find an object only in the bedroom, it's likely connected to sleeping.
"The fact that we found CNTNAP2 concentrated in the brain's structures that are involved in higher cognition gives us strong clues about how its disruption might adversely shape brain development, including speech and language," he said.
In an unexpected third finding, the scientists found that statistical evidence for the gene was strongest in families with autistic boys. Less of an association appeared in families with autistic boys and girls, or in families with autistic girls only.
"Autism strikes boys three times as often as girls," said Maricela Alarcon, first author and UCLA assistant professor in residence of neurology. "This finding may partly explain why."
The 3:1 gender ratio between boys and girls also applies to rates of attention deficit disorders, learning disabilities and language disorders.
"It will be interesting to learn whether CNTNAP2 also plays a role in language development in non-autistic children," observed Alarcon. "Our next step will be to identify more traits, such as seizures or other symptoms, that will help us track down additional genes linked to the disorder."
Coauthors included Jacqueline Duvall, Julia Perederiy, Jamee Bomar, Stanley Nelson and Rita Cantor, all from UCLA. Jennifer Stone of Harvard University, Jonathan Sebat and Michael Wigler of Cold Spring Harbor Laboratory, and Christa Martin and David Ledbetter of Emory University also contributed to the research.
The study was primarily supported with funding from the National Institute of Mental Health, National Institute of Neurological Disease and Stroke, Cure Autism Now Foundation and UCLA Center for Autism Research and Treatment. The authors had no competing financial interests.
Adapted from materials provided by University of California - Los Angeles.
See also:
Health & Medicine
Children's Health
Birth Defects
Genes
Mind & Brain
Autism
Child Development
Language Acquisition
Reference
Autistic spectrum
Gluten-free, casein-free diet
Rett syndrome
Huntington's disease
The American Journal of Human Genetics publishes the findings in its Jan. 10 online edition, which also features two studies from research teams at Yale and Johns Hopkins that used different methods that pinpointed the same gene. The coincidence suggests that the gene, called contactin-associated protein-like 2 (CNTNAP2), likely plays a key role in the development of autism.
"This gene not only may predispose children to autism," said Dr. Daniel Geschwind, principal investigator and Gordon and Virginia MacDonald Distinguished Professor of Human Genetics at the David Geffen School of Medicine. "It also may influence the development of brain structures involved in language, providing a tangible link between genes, the brain and behavior."
Children normally utter their first word by age 1. Children with autism, however, can be speech-delayed by many months or even years. Some never speak language at all. Late language onset is a symptom shared by most children with autism.
In an earlier study, the UCLA investigators studied the DNA of 291 families nationwide who had donated blood samples to the Los Angeles-based Autism Genetic Resource Exchange. Each family had at least one autistic child; youngsters who had never spoken were excluded. The findings connected a specific region of Chromosome 7, called 7q35, to autism.
In the current study, the researchers scrutinized every gene in the 7q35 region using DNA samples from 172 families. They identified four promising genes; one of the candidates was CNTNAP2.
To verify their findings, the scientists conducted a second test on a new group of 304 families. The CNTNAP2 gene showed up consistently, confirming its implication in language development.
In a second approach, the researchers examined CNTNAP2's presence in early brain tissue and discovered that the gene was most active in developing brain structures involved in language and thought.
Postdoctoral fellow Brett Abrahams, who led this part of the research, explains the finding's significance by comparing the brain to a house.
"We know that different rooms in houses serve different purposes," said Abrahams. "For example, if an item only appears in the kitchen, it makes sense to assume it's involved in cooking. Or if we find an object only in the bedroom, it's likely connected to sleeping.
"The fact that we found CNTNAP2 concentrated in the brain's structures that are involved in higher cognition gives us strong clues about how its disruption might adversely shape brain development, including speech and language," he said.
In an unexpected third finding, the scientists found that statistical evidence for the gene was strongest in families with autistic boys. Less of an association appeared in families with autistic boys and girls, or in families with autistic girls only.
"Autism strikes boys three times as often as girls," said Maricela Alarcon, first author and UCLA assistant professor in residence of neurology. "This finding may partly explain why."
The 3:1 gender ratio between boys and girls also applies to rates of attention deficit disorders, learning disabilities and language disorders.
"It will be interesting to learn whether CNTNAP2 also plays a role in language development in non-autistic children," observed Alarcon. "Our next step will be to identify more traits, such as seizures or other symptoms, that will help us track down additional genes linked to the disorder."
Coauthors included Jacqueline Duvall, Julia Perederiy, Jamee Bomar, Stanley Nelson and Rita Cantor, all from UCLA. Jennifer Stone of Harvard University, Jonathan Sebat and Michael Wigler of Cold Spring Harbor Laboratory, and Christa Martin and David Ledbetter of Emory University also contributed to the research.
The study was primarily supported with funding from the National Institute of Mental Health, National Institute of Neurological Disease and Stroke, Cure Autism Now Foundation and UCLA Center for Autism Research and Treatment. The authors had no competing financial interests.
Adapted from materials provided by University of California - Los Angeles.
Thursday, January 10, 2008
New Genetic Link to Autism Reported
By DAVID ARMSTRONGJanuary 10, 2008; Page D4 Researchers have identified a new genetic link to autism using recently developed gene-scanning technology that sorts through hundreds of thousands of genetic markers to pinpoint abnormalities.
Research teams in Boston and Chicago, publishing separate studies in different medical journals, independently identified a genetic variation -- in a region of the DNA called chromosome 16 -- that is associated with about 1% of all autism cases. The abnormality is often not inherited, the researchers found.
The identification of a genetic defect tied to the risk of developing autism isn't new. About 15% of autism cases have a known genetic cause, says David Miller, a researcher at Children's Hospital in Boston and a co-author of one of the studies.
Nonetheless, the discoveries related to chromosome 16 offer promising clues for future research. University of Chicago researchers, who published their results in Human Molecular Genetics, say the loss of a small portion of chromosome 16 results in a corresponding loss of 25 genes. At least three of those genes are thought to influence behavior, say the researchers, making them prime candidates for autism research.
"The hope is that eventually, if we can find genes that lead to brain mechanisms, we can think about treatment," said Fred Volkmar, an autism expert and director of the child study center at the Yale University School of Medicine, who wasn't involved in either study. He cautioned, however, that this work is "many steps down the road," and that the findings regarding chromosome 16 are only "one step in a very complicated puzzle we have to piece together."
About one in 150 children under the age of three is diagnosed with autism. Symptoms range from mild to profound, and include impaired social interaction, problems speaking or communicating, and unusual or repetitive behaviors.
In the second study, published yesterday in the online edition of the New England Journal of Medicine, researchers from a group of Boston hospitals and universities known as the Autism Consortium scanned DNA samples from more than 3,000 children and families to identify the link to chromosome 16.
The researchers took advantage of new technology that maps five to 10 times more genetic markers in the human genome than before, making it easier to identify specific abnormalities. Two companies -- Affymetrix Inc. and Agilent Technologies Inc. -- produce the DNA maps used by the Boston researchers. Using a laser scanner and complex computer algorithms, the researchers compared those DNA maps with samples taken from children with autism or suspected of having an autism-related disorder.
Research teams in Boston and Chicago, publishing separate studies in different medical journals, independently identified a genetic variation -- in a region of the DNA called chromosome 16 -- that is associated with about 1% of all autism cases. The abnormality is often not inherited, the researchers found.
The identification of a genetic defect tied to the risk of developing autism isn't new. About 15% of autism cases have a known genetic cause, says David Miller, a researcher at Children's Hospital in Boston and a co-author of one of the studies.
Nonetheless, the discoveries related to chromosome 16 offer promising clues for future research. University of Chicago researchers, who published their results in Human Molecular Genetics, say the loss of a small portion of chromosome 16 results in a corresponding loss of 25 genes. At least three of those genes are thought to influence behavior, say the researchers, making them prime candidates for autism research.
"The hope is that eventually, if we can find genes that lead to brain mechanisms, we can think about treatment," said Fred Volkmar, an autism expert and director of the child study center at the Yale University School of Medicine, who wasn't involved in either study. He cautioned, however, that this work is "many steps down the road," and that the findings regarding chromosome 16 are only "one step in a very complicated puzzle we have to piece together."
About one in 150 children under the age of three is diagnosed with autism. Symptoms range from mild to profound, and include impaired social interaction, problems speaking or communicating, and unusual or repetitive behaviors.
In the second study, published yesterday in the online edition of the New England Journal of Medicine, researchers from a group of Boston hospitals and universities known as the Autism Consortium scanned DNA samples from more than 3,000 children and families to identify the link to chromosome 16.
The researchers took advantage of new technology that maps five to 10 times more genetic markers in the human genome than before, making it easier to identify specific abnormalities. Two companies -- Affymetrix Inc. and Agilent Technologies Inc. -- produce the DNA maps used by the Boston researchers. Using a laser scanner and complex computer algorithms, the researchers compared those DNA maps with samples taken from children with autism or suspected of having an autism-related disorder.
UC Davis MIND institute researcher receives funding to treat toddlers for autism
Article Created: 01/09/2008 09:38:04 AM PST
UC Davis M.I.N.D. Institute researcher Sally J. Rogers has received $15.3 million to test the effects of an intensive intervention for toddlers with autism that combines play- and relationship-based approaches with applied behavior analysis.
This five-year study is the first multisite, randomized trial funded by the National Institutes of Health to determine if intervention earlier than 24 months of age is effective for children in reducing - or circumventing altogether - the language impairments and social deficits associated with the serious developmental disorder. Researchers will also determine the behavioral factors that help predict whether or not a child will respond well to this early treatment.
Rogers, one of the world's leading researchers on autism treatment, will be joined in the investigation by Annette Estes, research assistant professor of psychiatry and behavioral sciences and associate director of the University of Washington Autism Center; and Catherine Lord, professor of psychology and psychiatry and director of the University of Michigan Autism and Communication Disorders Center.
"There is very little published about the effectiveness of any intervention model for children in treatment earlier than age 2. However there are some very promising results from a feasibility study that is being conducted at the University of Washington," said Rogers, professor of psychiatry and behavioral sciences with the UCD M.I.N.D. Institute and the study's principal investigator. "With this new funding, we can broaden that study and truly provide an 'acid test' of the effectiveness of this type of interventional approach for very young children with autism."
The intervention to be tested - the Early Start Denver Model - was developed by Rogers, Geraldine Dawson, a study consultant and professor emeritus of psychology at the University of Washington, and their collaborators at the University of Washington, the M.I.N.D. Institute and University of Colorado Health Sciences Center. The approach fuses developmental and relationship-based intervention techniques with applied behavior analysis teaching strategies. It focuses on using play and positive reciprocal interactions to teach a developmental curriculum designed for each child based on current abilities and interests.
The individualized approach is what makes the model easy to adapt for younger children. A combination of the developmental curriculum, teaching techniques based on applied behavior analysis, and warm, engaging social exchanges between an adult and the child is used to achieve measurable treatment goals targeting affective connection, social relatedness and communication skills.
Together, the three study sites will recruit a total of 108 children aged 18-to-30 months who have symptoms of autism.
Children enrolled in the study will receive intensive, one-on-one intervention in their homes for more than 25 hours per week over the course of two years, and caregivers will be instructed on how to deliver the intervention themselves. Results will be compared to children of the same age receiving standard community interventions - such as occupational therapy, speech therapy, special preschools or applied behavioral analysis - to determine the efficacy of the Early Start Denver Model at measurably reducing some or much of the disability associated with autism.
"There are reports that this type of intensive treatment early in life significantly improves the development of useful speech and decreases the severity of cognitive impairments in children with autism," Rogers said. "However, most interventions are designed for older preschoolers. It's time to find out if they work or need to be adjusted for the very young. This is especially important as we are able to diagnose autism earlier and earlier. It is essential to have treatment options with proven results to recommend to children of any age once the diagnosis of autism is given."
The UCD M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into causes, treatments and cures for neurodevelopmental disorders, including autism, fragile X syndrome, Tourette's syndrome, ADHD and learning disorders.
UC Davis M.I.N.D. Institute researcher Sally J. Rogers has received $15.3 million to test the effects of an intensive intervention for toddlers with autism that combines play- and relationship-based approaches with applied behavior analysis.
This five-year study is the first multisite, randomized trial funded by the National Institutes of Health to determine if intervention earlier than 24 months of age is effective for children in reducing - or circumventing altogether - the language impairments and social deficits associated with the serious developmental disorder. Researchers will also determine the behavioral factors that help predict whether or not a child will respond well to this early treatment.
Rogers, one of the world's leading researchers on autism treatment, will be joined in the investigation by Annette Estes, research assistant professor of psychiatry and behavioral sciences and associate director of the University of Washington Autism Center; and Catherine Lord, professor of psychology and psychiatry and director of the University of Michigan Autism and Communication Disorders Center.
"There is very little published about the effectiveness of any intervention model for children in treatment earlier than age 2. However there are some very promising results from a feasibility study that is being conducted at the University of Washington," said Rogers, professor of psychiatry and behavioral sciences with the UCD M.I.N.D. Institute and the study's principal investigator. "With this new funding, we can broaden that study and truly provide an 'acid test' of the effectiveness of this type of interventional approach for very young children with autism."
The intervention to be tested - the Early Start Denver Model - was developed by Rogers, Geraldine Dawson, a study consultant and professor emeritus of psychology at the University of Washington, and their collaborators at the University of Washington, the M.I.N.D. Institute and University of Colorado Health Sciences Center. The approach fuses developmental and relationship-based intervention techniques with applied behavior analysis teaching strategies. It focuses on using play and positive reciprocal interactions to teach a developmental curriculum designed for each child based on current abilities and interests.
The individualized approach is what makes the model easy to adapt for younger children. A combination of the developmental curriculum, teaching techniques based on applied behavior analysis, and warm, engaging social exchanges between an adult and the child is used to achieve measurable treatment goals targeting affective connection, social relatedness and communication skills.
Together, the three study sites will recruit a total of 108 children aged 18-to-30 months who have symptoms of autism.
Children enrolled in the study will receive intensive, one-on-one intervention in their homes for more than 25 hours per week over the course of two years, and caregivers will be instructed on how to deliver the intervention themselves. Results will be compared to children of the same age receiving standard community interventions - such as occupational therapy, speech therapy, special preschools or applied behavioral analysis - to determine the efficacy of the Early Start Denver Model at measurably reducing some or much of the disability associated with autism.
"There are reports that this type of intensive treatment early in life significantly improves the development of useful speech and decreases the severity of cognitive impairments in children with autism," Rogers said. "However, most interventions are designed for older preschoolers. It's time to find out if they work or need to be adjusted for the very young. This is especially important as we are able to diagnose autism earlier and earlier. It is essential to have treatment options with proven results to recommend to children of any age once the diagnosis of autism is given."
The UCD M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into causes, treatments and cures for neurodevelopmental disorders, including autism, fragile X syndrome, Tourette's syndrome, ADHD and learning disorders.
Dear Colleague Letter: Access by Students with Disabilities to Accelerated Programs
OFFICE OF THE ASSISTANT SECRETARY
DEC 26, 2007
Dear Colleague:
I am writing to advise you of an issue involving students with disabilities seeking enrollment in challenging academic programs, such as Advanced Placement and International Baccalaureate classes or programs (accelerated programs). Specifically, it has been reported that some schools and school districts have refused to allow qualified students with disabilities to participate in such programs. Similarly, we are informed of schools and school districts that, as a condition of participation in such programs, have required qualified students with disabilities to give up the services that have been designed to meet their individual needs. These practices are inconsistent with Federal law, and the Office for Civil Rights (OCR) in the U.S. Department of Education will continue to act promptly to remedy such violations where they occur.
As you know, OCR is responsible for enforcing two Federal laws that protect qualified individuals with disabilities from discrimination. OCR enforces Section 504 of the Rehabilitation Act of 1973 (Section 504) and its implementing regulations at 34 CFR Part 104, which prohibit discrimination on the basis of disability in programs or activities receiving Federal financial assistance. OCR is also responsible, in the education context, for enforcing Title II of the Americans with Disabilities Act of 1990 (Title II) and its implementing regulations at 28 CFR Part 35, which prohibit discrimination on the basis of disability by entities of State and local government. Although this letter discusses aspects of the Section 504 regulation, Title II provides no lesser protections than does Section 504. Also relevant are the requirements of the Individuals with Disabilities Education Act (IDEA), which is administered by the Department’s Office of Special Education Programs (OSEP). The IDEA provides funds to States and school districts in order to assist them in providing special education and related services to eligible children with disabilities. The IDEA’s implementing regulations are located at 34 CFR Part 300. OCR consulted with OSEP in drafting this letter.1
As an initial matter, I want to commend the efforts so many of you have made to ensure that placement decisions for all students are based on each student’s individual academic abilities regardless of the presence, nature, or severity of a disability. I want to ensure that all of you are aware of the Federal civil rights requirements discussed below.
Prohibition Against Disability-Based Discrimination in Accelerated Programs
The practice of denying, on the basis of disability, a qualified student with a disability the opportunity to participate in an accelerated program violates both Section 504 and Title II. Discrimination prohibited by these laws includes, on the basis of disability, denying a qualified individual with a disability the opportunity to participate in or benefit from the recipient’s aids, benefits, or services, and affording a qualified individual with a disability with an opportunity to participate in or benefit from the aid, benefit or service in a manner that is not equal to that offered to individuals without disabilities. 34 CFR 104.4(a), (b)(1)(i), (b)(1)(ii); 28 CFR 35.130(a), (b)(1)(i), (b)(1)(ii).
Under Section 504 and Title II, a recipient may not utilize criteria or methods of administration that have the effect of subjecting qualified individuals with disabilities to discrimination on the basis of disability. 34 CFR 104.4(b)(4) and 28 CFR 35.130(b)(3). A public entity also may not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered. 28 CFR 35.130(b)(8). Public school students with disabilities who require special education and/or related services receive them either through implementation of an individualized education program (IEP) developed in accordance with Part B of the IDEA or a plan developed under Section 504. 34 CFR 104.33. It is unlawful to deny a student with a disability admission to an accelerated class or program solely because of that student’s need for special education or related aids and services2, or because that student has an IEP or a plan under Section 504. The practice of conditioning participation in an accelerated class or program by a qualified student with a disability on the forfeiture of special education or of related aids and services to which the student is legally entitled also violates the Section 504 and Title II requirements stated above.
Please note that nothing in Section 504 or Title II requires schools to admit into accelerated classes or programs students with disabilities who would not otherwise be qualified for these classes or programs. Generally, under Section 504, an elementary or secondary school student with a disability is a qualified individual with a disability if the student is of compulsory school age. However, schools may employ appropriate eligibility requirements or criteria in determining whether to admit students, including students with disabilities, into accelerated programs or classes. Section 504 and Title II require that qualified students with disabilities be given the same opportunities to compete for and benefit from accelerated programs and classes as are given to students without disabilities. 34 CFR 104.4(b)(1)(ii) and 28 CFR 35.130(b)(1)(ii).
Furthermore, a recipient’s provision of necessary special education and related aids and services to qualified students with disabilities in accelerated classes or programs must be consistent with the Section 504 and Title II requirements regarding free appropriate public education (FAPE).
Free Appropriate Public Education
In general, conditioning participation in accelerated classes or programs by qualified students with disabilities on the forfeiture of necessary special education or related aids and services amounts to a denial of FAPE under both Part B of the IDEA and Section 504.
Section 504 requires a recipient that operates a public elementary or secondary education program or activity to provide FAPE to each qualified person with a disability who is in the recipient’s jurisdiction, regardless of the nature or severity of the person’s disability. 34 CFR 104.33(a). Under Section 504, the provision of an appropriate education is the provision of regular or special education and related aids and services that satisfy certain procedural requirements and that are designed to meet the individual education needs of persons with disabilities as adequately as the needs of persons without disabilities are met. 34 CFR 104.33(b)(1)(i). School districts may create a plan or other document to provide students with disabilities with FAPE pursuant to Section 504. The Section 504 FAPE requirement may also be met through the implementation of an IEP developed in accordance with Part B of the IDEA. 34 CFR 104.33(b)(2).
Part B of the IDEA requires that FAPE be made available to eligible students with disabilities in certain age ranges. The IDEA defines FAPE as special education and related services that: are provided free of charge; meet State standards; include an appropriate preschool, elementary school, or secondary school education; and are provided in conformity with a properly developed IEP. 20 USC § 1401(a)(9); 34 CFR 300.17.3
Participation by a student with a disability in an accelerated class or program generally would be considered part of the regular education or the regular classes referenced in the Section 504 and the IDEA regulations. Thus, if a qualified student with a disability requires related aids and services to participate in a regular education class or program, then a school cannot deny that student the needed related aids and services in an accelerated class or program. For example, if a student’s IEP or plan under Section 504 provides for Braille materials in order to participate in the regular education program and she enrolls in an accelerated or advanced history class, then she also must receive Braille materials for that class. The same would be true for other needed related aids and services such as extended time on tests or the use of a computer to take notes.
Conditioning enrollment in an advanced class or program on the forfeiture of needed special education or related aids and services is also inconsistent with the principle of individualized determinations, which is a key procedural aspect of the IDEA, Section 504 and Title II. As noted above, under Section 504, the provision of FAPE is based on the student’s individual education needs as determined through specific procedures--generally, an evaluation in accordance with Section 504 requirements. 34 CFR 104.35. An individualized determination may result in a decision that a qualified student with a disability requires related aids and services for some or all of his regular education classes or his program. Likewise, the IDEA contains specific procedures for evaluations and for the development of IEPs that require individualized determinations. See 34 CFR 300.301 through 300.328. The requirement for individualized determinations is violated when schools ignore the student’s individual needs and automatically deny a qualified student with a disability needed related aids and services in an accelerated class or program.
I urge you to use the information provided in this letter to continue to evaluate whether your school district is in compliance with these anti-discrimination requirements. OCR remains willing to continue supporting you in these efforts. We provide technical assistance to entities that request assistance in voluntarily complying with the civil rights laws that OCR enforces. If you need additional information or assistance on these or other matters, please do not hesitate to contact the OCR enforcement office that serves your state or territory. The contact information for each office is available online at: http://wdcrobcolp01.ed.gov/CFAPPS/OCR/contactus.cfm. I thank you in advance for your cooperation and assistance in this important matter.
Sincerely yours,
Stephanie J. Monroe
Assistant Secretary for Civil Rights
1 You may contact OSEP to address any issues that relate specifically to the requirements of IDEA. Contact information for OSEP is available online at: http://www.ed.gov/policy/speced/guid/idea/monitor/state-contact-list.html.2 The term "related aids and services" as used here is intended to include both the Section 504 requirements at 34 CFR 104.33(c) and the equivalent requirements under the IDEA, i.e. related services, supplementary aids and services, program modifications and supports for school personnel. See 34 CFR 300.34, 300.42, and 300.320(a)(4).3 Among other things, an IEP must contain a statement of the special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided to enable the child to advance appropriately toward attaining the annual goals; to be involved in and make progress in the general education curriculum and to participate in extracurricular and other nonacademic activities; and to be educated and participate with other children with disabilities and those without disabilities. An IEP also must contain an explanation of the extent, if any, to which the child will not participate with children without disabilities in the regular class and in these activities. 34 CFR 300.320(a)(4)-(5).
DEC 26, 2007
Dear Colleague:
I am writing to advise you of an issue involving students with disabilities seeking enrollment in challenging academic programs, such as Advanced Placement and International Baccalaureate classes or programs (accelerated programs). Specifically, it has been reported that some schools and school districts have refused to allow qualified students with disabilities to participate in such programs. Similarly, we are informed of schools and school districts that, as a condition of participation in such programs, have required qualified students with disabilities to give up the services that have been designed to meet their individual needs. These practices are inconsistent with Federal law, and the Office for Civil Rights (OCR) in the U.S. Department of Education will continue to act promptly to remedy such violations where they occur.
As you know, OCR is responsible for enforcing two Federal laws that protect qualified individuals with disabilities from discrimination. OCR enforces Section 504 of the Rehabilitation Act of 1973 (Section 504) and its implementing regulations at 34 CFR Part 104, which prohibit discrimination on the basis of disability in programs or activities receiving Federal financial assistance. OCR is also responsible, in the education context, for enforcing Title II of the Americans with Disabilities Act of 1990 (Title II) and its implementing regulations at 28 CFR Part 35, which prohibit discrimination on the basis of disability by entities of State and local government. Although this letter discusses aspects of the Section 504 regulation, Title II provides no lesser protections than does Section 504. Also relevant are the requirements of the Individuals with Disabilities Education Act (IDEA), which is administered by the Department’s Office of Special Education Programs (OSEP). The IDEA provides funds to States and school districts in order to assist them in providing special education and related services to eligible children with disabilities. The IDEA’s implementing regulations are located at 34 CFR Part 300. OCR consulted with OSEP in drafting this letter.1
As an initial matter, I want to commend the efforts so many of you have made to ensure that placement decisions for all students are based on each student’s individual academic abilities regardless of the presence, nature, or severity of a disability. I want to ensure that all of you are aware of the Federal civil rights requirements discussed below.
Prohibition Against Disability-Based Discrimination in Accelerated Programs
The practice of denying, on the basis of disability, a qualified student with a disability the opportunity to participate in an accelerated program violates both Section 504 and Title II. Discrimination prohibited by these laws includes, on the basis of disability, denying a qualified individual with a disability the opportunity to participate in or benefit from the recipient’s aids, benefits, or services, and affording a qualified individual with a disability with an opportunity to participate in or benefit from the aid, benefit or service in a manner that is not equal to that offered to individuals without disabilities. 34 CFR 104.4(a), (b)(1)(i), (b)(1)(ii); 28 CFR 35.130(a), (b)(1)(i), (b)(1)(ii).
Under Section 504 and Title II, a recipient may not utilize criteria or methods of administration that have the effect of subjecting qualified individuals with disabilities to discrimination on the basis of disability. 34 CFR 104.4(b)(4) and 28 CFR 35.130(b)(3). A public entity also may not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered. 28 CFR 35.130(b)(8). Public school students with disabilities who require special education and/or related services receive them either through implementation of an individualized education program (IEP) developed in accordance with Part B of the IDEA or a plan developed under Section 504. 34 CFR 104.33. It is unlawful to deny a student with a disability admission to an accelerated class or program solely because of that student’s need for special education or related aids and services2, or because that student has an IEP or a plan under Section 504. The practice of conditioning participation in an accelerated class or program by a qualified student with a disability on the forfeiture of special education or of related aids and services to which the student is legally entitled also violates the Section 504 and Title II requirements stated above.
Please note that nothing in Section 504 or Title II requires schools to admit into accelerated classes or programs students with disabilities who would not otherwise be qualified for these classes or programs. Generally, under Section 504, an elementary or secondary school student with a disability is a qualified individual with a disability if the student is of compulsory school age. However, schools may employ appropriate eligibility requirements or criteria in determining whether to admit students, including students with disabilities, into accelerated programs or classes. Section 504 and Title II require that qualified students with disabilities be given the same opportunities to compete for and benefit from accelerated programs and classes as are given to students without disabilities. 34 CFR 104.4(b)(1)(ii) and 28 CFR 35.130(b)(1)(ii).
Furthermore, a recipient’s provision of necessary special education and related aids and services to qualified students with disabilities in accelerated classes or programs must be consistent with the Section 504 and Title II requirements regarding free appropriate public education (FAPE).
Free Appropriate Public Education
In general, conditioning participation in accelerated classes or programs by qualified students with disabilities on the forfeiture of necessary special education or related aids and services amounts to a denial of FAPE under both Part B of the IDEA and Section 504.
Section 504 requires a recipient that operates a public elementary or secondary education program or activity to provide FAPE to each qualified person with a disability who is in the recipient’s jurisdiction, regardless of the nature or severity of the person’s disability. 34 CFR 104.33(a). Under Section 504, the provision of an appropriate education is the provision of regular or special education and related aids and services that satisfy certain procedural requirements and that are designed to meet the individual education needs of persons with disabilities as adequately as the needs of persons without disabilities are met. 34 CFR 104.33(b)(1)(i). School districts may create a plan or other document to provide students with disabilities with FAPE pursuant to Section 504. The Section 504 FAPE requirement may also be met through the implementation of an IEP developed in accordance with Part B of the IDEA. 34 CFR 104.33(b)(2).
Part B of the IDEA requires that FAPE be made available to eligible students with disabilities in certain age ranges. The IDEA defines FAPE as special education and related services that: are provided free of charge; meet State standards; include an appropriate preschool, elementary school, or secondary school education; and are provided in conformity with a properly developed IEP. 20 USC § 1401(a)(9); 34 CFR 300.17.3
Participation by a student with a disability in an accelerated class or program generally would be considered part of the regular education or the regular classes referenced in the Section 504 and the IDEA regulations. Thus, if a qualified student with a disability requires related aids and services to participate in a regular education class or program, then a school cannot deny that student the needed related aids and services in an accelerated class or program. For example, if a student’s IEP or plan under Section 504 provides for Braille materials in order to participate in the regular education program and she enrolls in an accelerated or advanced history class, then she also must receive Braille materials for that class. The same would be true for other needed related aids and services such as extended time on tests or the use of a computer to take notes.
Conditioning enrollment in an advanced class or program on the forfeiture of needed special education or related aids and services is also inconsistent with the principle of individualized determinations, which is a key procedural aspect of the IDEA, Section 504 and Title II. As noted above, under Section 504, the provision of FAPE is based on the student’s individual education needs as determined through specific procedures--generally, an evaluation in accordance with Section 504 requirements. 34 CFR 104.35. An individualized determination may result in a decision that a qualified student with a disability requires related aids and services for some or all of his regular education classes or his program. Likewise, the IDEA contains specific procedures for evaluations and for the development of IEPs that require individualized determinations. See 34 CFR 300.301 through 300.328. The requirement for individualized determinations is violated when schools ignore the student’s individual needs and automatically deny a qualified student with a disability needed related aids and services in an accelerated class or program.
I urge you to use the information provided in this letter to continue to evaluate whether your school district is in compliance with these anti-discrimination requirements. OCR remains willing to continue supporting you in these efforts. We provide technical assistance to entities that request assistance in voluntarily complying with the civil rights laws that OCR enforces. If you need additional information or assistance on these or other matters, please do not hesitate to contact the OCR enforcement office that serves your state or territory. The contact information for each office is available online at: http://wdcrobcolp01.ed.gov/CFAPPS/OCR/contactus.cfm. I thank you in advance for your cooperation and assistance in this important matter.
Sincerely yours,
Stephanie J. Monroe
Assistant Secretary for Civil Rights
1 You may contact OSEP to address any issues that relate specifically to the requirements of IDEA. Contact information for OSEP is available online at: http://www.ed.gov/policy/speced/guid/idea/monitor/state-contact-list.html.2 The term "related aids and services" as used here is intended to include both the Section 504 requirements at 34 CFR 104.33(c) and the equivalent requirements under the IDEA, i.e. related services, supplementary aids and services, program modifications and supports for school personnel. See 34 CFR 300.34, 300.42, and 300.320(a)(4).3 Among other things, an IEP must contain a statement of the special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided to enable the child to advance appropriately toward attaining the annual goals; to be involved in and make progress in the general education curriculum and to participate in extracurricular and other nonacademic activities; and to be educated and participate with other children with disabilities and those without disabilities. An IEP also must contain an explanation of the extent, if any, to which the child will not participate with children without disabilities in the regular class and in these activities. 34 CFR 300.320(a)(4)-(5).
Interview with Roy Richard Grinker Author of Unstrange Minds: Remapping the World of Autism
BENJAMIN RADFORD
Benjamin Radford has investigated ghosts, psychics, lake monsters, UFOs, mass hysterias, and many other paranormal phenomena for over a decade. He is the author or co-author of three books; his latest (with fellow investigator Joe Nickell) is Lake Monster Mysteries: Investigating the World's Most Elusive Creatures. His Web site is at www.RadfordBooks.com.
There are many myths and much pseudoscience surrounding the diseases now called autism. Some have to do with vaccines, as the pieces by Steven Novella and Richard Judelsohn discuss in this special section. Other myths include the long-discredited practice of facilitated communication, in which “facilitators” help illiterate autistic children type out words and sentences—as well as occasional unfounded accusations of abuse. Yet many myths and questions remain, especially related to the prevalence and underlying diagnosis of autism.
In a new book on autism, Roy Richard Grinker (a professor of anthropology at George Washington University and himself the parent of an autistic daughter) examines the disease from a social and anthropological perspective. Here is an interview based on his book Unstrange Minds: Remapping the World of Autism.
How did you first become interested in the subject of autism?
I wear two hats. I am an anthropologist and the father of a child with autism. So, as autism awareness grew, more and more people said, “So you’re an anthropologist, what does autism look like in other cultures? Is the prevalence the same as it is here? What do people do about it?” I wrote Unstrange Minds so that people can see that autism is universal and that autism awareness is increasing everywhere in the world. But the most important reason for writing the book—though this was not my original intention—was to tell the world a simple message: the increase in autism diagnoses is not a crisis but rather evidence that we’re finally beginning to address a kind of human difference that has for too long been misunderstood, misdiagnosed, and mismanaged. More than six decades after autism was first described by Leo Kanner, we’re finally getting it right, and counting it right.
Why do you challenge the idea that autism is an epidemic?
Because so many Americans and Europeans are in a panic that there is a true epidemic, and that if there is an epidemic there must be some new, identifiable cause out there somewhere to be found and eradicated. I thought I could articulate some of the cultural and scientific reasons behind the increase in rates and give a positive message: the higher rates are due to positive changes in the way we understand and treat neurological and psychiatric disorders.
If autism is not an epidemic, how did it come to be viewed as one?
Autism became viewed as an epidemic for the same reason there have been fears of epidemics of other illnesses: there is a dramatic increase in prevalence. But prevalence is just the number of cases counted at a particular point in time and is not evidence of true increases in a disease. The same happened with melanoma and prostate cancer. There were huge increases in prevalence in those diseases, because they were being diagnosed so much more (skin cancer, due to increased awareness and more biopsies of early stage cancers; prostate cancer because of the invention of the PSA blood test, as opposed to the painful method of inserting a tool through the tip of the penis all the way to the prostate). It really is confusing to see diagnosis rates of three or four in ten thousand twenty years ago change to rates of 1 in 150. On the surface it sounds frightening.
So it’s the public’s lack of understanding about the methodology?
I think scientists have not done a good job of explaining to the public that comparing these rates is like comparing apples and oranges. The rates in, say, 1980, were derived using a narrow definition of autism and using administrative statistics (mostly numbers of kids enrolled in programs under the category of “autism”) at a time when autism was not a popular diagnosis. Today’s rates are derived using a very broad definition of autism (people from the severely mentally retarded to people who marry and hold jobs and may even be college professors) and using reliable and valid measurements that have only recently been developed.
In Korea, where I’m doing an epidemiological study, we cannot even try to use administrative statistics, because autism is unpopular as a diagnosis. If you used the enrollment figures, you’d think autism was almost nonexistent in Korea. Yet, we’re finding rates not out of line with the rest of the world. Second, the increased awareness has meant that people see autism more—the decreased stigma has helped too, since people don’t hide their kids anymore. So it feels like an epidemic. But a feeling is different from science.
So what accounts for the apparent increase in the prevalence of autism?
They are described carefully in my book: new epidemiological methods yield many more cases; a much larger number of people are being diagnosed with autism today because autism is a spectrum that can include the profoundly mentally retarded person but also a brilliant scientist; more and more physicians are giving the diagnosis and then kids are being coded in the school system with autism (some epidemiologists who do records-based research then rely on the school records for their information); people who were once called mentally retarded or schizophrenic or a host of other things are now being diagnosed with autism. There is no single factor among all of these that trumps the others, but I think the least understood is the change in epidemiological methods.
What do you think are the biggest misconceptions that the public has about autism?
One misconception is that we need to have an “epidemic” to call attention to a disorder. Some parents and philanthropic organizations have called me a traitor and accused me of betraying the autism community. On the one hand, I don’t agree with the way philanthropic organizations have fueled the fears of an epidemic. An epidemic is a useful fiction for fundraising. On the other hand, the organizations do so much for autism awareness, research, and services that sometimes I feel a little guilty, as if by telling the truth some people might be less likely to give money. But that guilt is fleeting.
The reality is that (1) the higher rates mean that autism is a bigger public health issue than we ever realized; and (2) there is nothing mutually exclusive about saying there’s no epidemic and at the same saying that we’ve finally figured out what’s going on with people on the autism spectrum, and we need more research and services. I recently received an e-mail from a parent who decried my stance: “How can you say there is no epidemic of autism?” she wrote. “When I was in school, there were no kids with special needs in my school. Today, in my daughter’s school there are dozens.” Actually, that is my point. In the past autistic people were not included in our schools. Today they are. And that’s a very good thing.
Another big misconception is that autism is somehow new. I am frequently asked: If there is no epidemic, then where are all the adults with autism? The answer is easy, but also complicated. Finding adults with autism is very hard, not because they do not exist but because they are dispersed in our society. Some live in group homes, others in institutions, others are living and working among us in our everyday lives. Kids are easy to count because they are all in school, neatly recorded in school records. But adults are a different story. Counting adults with autism would be like trying to count adults with speech and language disorders. You can count kids, but where would we find the adults? So many people with speech and language disorders don’t get speech services as adults—they’ve learned to adjust, adapt, and manage. No one “missed” or “ignored” autistic people in the past. They were just called something else, or in some cases (like people with Asperger’s) called nothing at all.
An additional misconception is that an environmental factor equals an environmental toxin. Environment probably plays some very small role in causing autism, but environment can mean everything in the world, from chemicals, to our diet and way of life. No environmental factor has yet been identified by scientists to account for autism, let alone changes in autism prevalence. Looking for environmental factors in autism at this stage in our knowledge is really like looking for needles in haystacks.
Why do you think the news media have engaged in such misleading and alarmist coverage about autism?
Fear, panic, and deep parental concern get a lot of attention. Compare the two messages: “There’s an epidemic and we don’t know what is causing it!” and “More people are being diagnosed with autism today because we understand it better.” Plus, autism in the news is usually about autism in children (despite the fact that autistic children grow into adults), and children are very engaging as television, radio, and newspaper subjects. Advocacy by organizations whose membership is convinced there is an epidemic caused by an environmental toxin has been well funded and supported by politicians, especially by politicians in the states with the most autism services (and hence, because of those services, the highest rates of diagnosis).
What has been the reaction to your book, both by medical professionals and by parents of autistic children?
The scientific community, from what I can tell so far, supports my work strongly (e.g., reviews in Nature and the New England Journal of Medicine). Much of what I’m saying about the reasons for the so-called epidemic has been said before in scientific journals. What I’ve done is to put all those arguments together and place them in a larger context of American social change in a way that is accessible to a wide audience. The fact that the book is being reviewed in both scientific journals and in the popular press, such as People magazine, is an indication to me that I’ve succeeded in reaching a large readership. Among parents of children with autism, the reception has been mixed. Many, many parents find Unstrange Minds to be inspiring because I talk about how many families in the world have turned something potentially devastating into something uplifting and rewarding. Others have sent me hate mail and left angry telephone messages on my answering machine at work. I have been called every kind of name.
What does the science suggest are the causes of autism?
There are probably several different kinds of autism caused by several different genetic pathways. There may be, in total, several dozen different genes involved. Scientists at Cold Springs Harbor Laboratory in New York have generated one of the most interesting genetic models, suggesting that some cases are heritable, but usually over the span of a couple of generations through a nonaffected carrier, and other cases are de novo mutations. But the bottom line is: it is largely genetic, so much so that environment probably plays [only] a small role. One way scientists estimate the role of genetics in a certain disorder is to look at concordance of that disorder in identical twins, that is, two people with identical DNA. The concordance, or percentage of people with identical DNA who both suffer from an autism spectrum disorder, is as high as 90 percent in some studies. That’s higher than the concordance for coronary artery disease, depression, or breast cancer. Then, when the scientists look at fraternal twins, who don’t have the same DNA, they find a concordance as low as 0 percent and as high as 10 percent. That makes ASD strongly genetic.
If autism is partly genetic, should there be prenatal testing to determine if a fetus is autistic?
That is a huge ethical question, but perhaps it’s premature. We know that schizophrenia, bipolar disorder, breast cancer, and many other disorders have a strong genetic component, but they cannot be tested for in the womb. Multigenic complex disorders are very different from, say, Down syndrome, which is an identifiable mutation in which there is extra genetic material (a twenty-first chromosome), so it can be tested for. Autism is a totally different kind of condition.
In explaining how disease diagnosis is culturally dependent, you draw from many cultures and countries, including the Navajo and family lines in China and Peru. What are two of the most vivid examples in your mind?
The Korean case is one of the most fascinating to me. This is a country in which scientists and doctors and government officials have said that autism is a rare or nearly nonexistent disorder in Korea. The school and clinic records support that contention, because one seldom finds any mention of anyone with “autism.” Autism, when it is diagnosed, is highly stigmatizing because it is seen as a genetic disorder. If a disorder is genetic, the family feels that the entire family is damaged, and this brings shame and stigma. So parents would rather see themselves as bad parents who caused autism in their child through bad parenting than see the disorder as genetic. This is the opposite of what happened in the U.S., where mothers and fathers used to be blamed, but we now see the disorder as genetic. At any rate, I went into Korea with a team of epidemiologists and psychiatrists and psychologists, and we have screened thirty thousand kids and done extensive testing. And we’re finding lots of autism. The kids just are not called autistic. They are undiagnosed or diagnosed with something else. So, in Korea, we’re seeing a culturally different version of what has already happened in the U.S. and higher prevalence rates in Korea are on their way: not because autism is new as a condition, but because autism is new as a concept.
Benjamin Radford has investigated ghosts, psychics, lake monsters, UFOs, mass hysterias, and many other paranormal phenomena for over a decade. He is the author or co-author of three books; his latest (with fellow investigator Joe Nickell) is Lake Monster Mysteries: Investigating the World's Most Elusive Creatures. His Web site is at www.RadfordBooks.com.
There are many myths and much pseudoscience surrounding the diseases now called autism. Some have to do with vaccines, as the pieces by Steven Novella and Richard Judelsohn discuss in this special section. Other myths include the long-discredited practice of facilitated communication, in which “facilitators” help illiterate autistic children type out words and sentences—as well as occasional unfounded accusations of abuse. Yet many myths and questions remain, especially related to the prevalence and underlying diagnosis of autism.
In a new book on autism, Roy Richard Grinker (a professor of anthropology at George Washington University and himself the parent of an autistic daughter) examines the disease from a social and anthropological perspective. Here is an interview based on his book Unstrange Minds: Remapping the World of Autism.
How did you first become interested in the subject of autism?
I wear two hats. I am an anthropologist and the father of a child with autism. So, as autism awareness grew, more and more people said, “So you’re an anthropologist, what does autism look like in other cultures? Is the prevalence the same as it is here? What do people do about it?” I wrote Unstrange Minds so that people can see that autism is universal and that autism awareness is increasing everywhere in the world. But the most important reason for writing the book—though this was not my original intention—was to tell the world a simple message: the increase in autism diagnoses is not a crisis but rather evidence that we’re finally beginning to address a kind of human difference that has for too long been misunderstood, misdiagnosed, and mismanaged. More than six decades after autism was first described by Leo Kanner, we’re finally getting it right, and counting it right.
Why do you challenge the idea that autism is an epidemic?
Because so many Americans and Europeans are in a panic that there is a true epidemic, and that if there is an epidemic there must be some new, identifiable cause out there somewhere to be found and eradicated. I thought I could articulate some of the cultural and scientific reasons behind the increase in rates and give a positive message: the higher rates are due to positive changes in the way we understand and treat neurological and psychiatric disorders.
If autism is not an epidemic, how did it come to be viewed as one?
Autism became viewed as an epidemic for the same reason there have been fears of epidemics of other illnesses: there is a dramatic increase in prevalence. But prevalence is just the number of cases counted at a particular point in time and is not evidence of true increases in a disease. The same happened with melanoma and prostate cancer. There were huge increases in prevalence in those diseases, because they were being diagnosed so much more (skin cancer, due to increased awareness and more biopsies of early stage cancers; prostate cancer because of the invention of the PSA blood test, as opposed to the painful method of inserting a tool through the tip of the penis all the way to the prostate). It really is confusing to see diagnosis rates of three or four in ten thousand twenty years ago change to rates of 1 in 150. On the surface it sounds frightening.
So it’s the public’s lack of understanding about the methodology?
I think scientists have not done a good job of explaining to the public that comparing these rates is like comparing apples and oranges. The rates in, say, 1980, were derived using a narrow definition of autism and using administrative statistics (mostly numbers of kids enrolled in programs under the category of “autism”) at a time when autism was not a popular diagnosis. Today’s rates are derived using a very broad definition of autism (people from the severely mentally retarded to people who marry and hold jobs and may even be college professors) and using reliable and valid measurements that have only recently been developed.
In Korea, where I’m doing an epidemiological study, we cannot even try to use administrative statistics, because autism is unpopular as a diagnosis. If you used the enrollment figures, you’d think autism was almost nonexistent in Korea. Yet, we’re finding rates not out of line with the rest of the world. Second, the increased awareness has meant that people see autism more—the decreased stigma has helped too, since people don’t hide their kids anymore. So it feels like an epidemic. But a feeling is different from science.
So what accounts for the apparent increase in the prevalence of autism?
They are described carefully in my book: new epidemiological methods yield many more cases; a much larger number of people are being diagnosed with autism today because autism is a spectrum that can include the profoundly mentally retarded person but also a brilliant scientist; more and more physicians are giving the diagnosis and then kids are being coded in the school system with autism (some epidemiologists who do records-based research then rely on the school records for their information); people who were once called mentally retarded or schizophrenic or a host of other things are now being diagnosed with autism. There is no single factor among all of these that trumps the others, but I think the least understood is the change in epidemiological methods.
What do you think are the biggest misconceptions that the public has about autism?
One misconception is that we need to have an “epidemic” to call attention to a disorder. Some parents and philanthropic organizations have called me a traitor and accused me of betraying the autism community. On the one hand, I don’t agree with the way philanthropic organizations have fueled the fears of an epidemic. An epidemic is a useful fiction for fundraising. On the other hand, the organizations do so much for autism awareness, research, and services that sometimes I feel a little guilty, as if by telling the truth some people might be less likely to give money. But that guilt is fleeting.
The reality is that (1) the higher rates mean that autism is a bigger public health issue than we ever realized; and (2) there is nothing mutually exclusive about saying there’s no epidemic and at the same saying that we’ve finally figured out what’s going on with people on the autism spectrum, and we need more research and services. I recently received an e-mail from a parent who decried my stance: “How can you say there is no epidemic of autism?” she wrote. “When I was in school, there were no kids with special needs in my school. Today, in my daughter’s school there are dozens.” Actually, that is my point. In the past autistic people were not included in our schools. Today they are. And that’s a very good thing.
Another big misconception is that autism is somehow new. I am frequently asked: If there is no epidemic, then where are all the adults with autism? The answer is easy, but also complicated. Finding adults with autism is very hard, not because they do not exist but because they are dispersed in our society. Some live in group homes, others in institutions, others are living and working among us in our everyday lives. Kids are easy to count because they are all in school, neatly recorded in school records. But adults are a different story. Counting adults with autism would be like trying to count adults with speech and language disorders. You can count kids, but where would we find the adults? So many people with speech and language disorders don’t get speech services as adults—they’ve learned to adjust, adapt, and manage. No one “missed” or “ignored” autistic people in the past. They were just called something else, or in some cases (like people with Asperger’s) called nothing at all.
An additional misconception is that an environmental factor equals an environmental toxin. Environment probably plays some very small role in causing autism, but environment can mean everything in the world, from chemicals, to our diet and way of life. No environmental factor has yet been identified by scientists to account for autism, let alone changes in autism prevalence. Looking for environmental factors in autism at this stage in our knowledge is really like looking for needles in haystacks.
Why do you think the news media have engaged in such misleading and alarmist coverage about autism?
Fear, panic, and deep parental concern get a lot of attention. Compare the two messages: “There’s an epidemic and we don’t know what is causing it!” and “More people are being diagnosed with autism today because we understand it better.” Plus, autism in the news is usually about autism in children (despite the fact that autistic children grow into adults), and children are very engaging as television, radio, and newspaper subjects. Advocacy by organizations whose membership is convinced there is an epidemic caused by an environmental toxin has been well funded and supported by politicians, especially by politicians in the states with the most autism services (and hence, because of those services, the highest rates of diagnosis).
What has been the reaction to your book, both by medical professionals and by parents of autistic children?
The scientific community, from what I can tell so far, supports my work strongly (e.g., reviews in Nature and the New England Journal of Medicine). Much of what I’m saying about the reasons for the so-called epidemic has been said before in scientific journals. What I’ve done is to put all those arguments together and place them in a larger context of American social change in a way that is accessible to a wide audience. The fact that the book is being reviewed in both scientific journals and in the popular press, such as People magazine, is an indication to me that I’ve succeeded in reaching a large readership. Among parents of children with autism, the reception has been mixed. Many, many parents find Unstrange Minds to be inspiring because I talk about how many families in the world have turned something potentially devastating into something uplifting and rewarding. Others have sent me hate mail and left angry telephone messages on my answering machine at work. I have been called every kind of name.
What does the science suggest are the causes of autism?
There are probably several different kinds of autism caused by several different genetic pathways. There may be, in total, several dozen different genes involved. Scientists at Cold Springs Harbor Laboratory in New York have generated one of the most interesting genetic models, suggesting that some cases are heritable, but usually over the span of a couple of generations through a nonaffected carrier, and other cases are de novo mutations. But the bottom line is: it is largely genetic, so much so that environment probably plays [only] a small role. One way scientists estimate the role of genetics in a certain disorder is to look at concordance of that disorder in identical twins, that is, two people with identical DNA. The concordance, or percentage of people with identical DNA who both suffer from an autism spectrum disorder, is as high as 90 percent in some studies. That’s higher than the concordance for coronary artery disease, depression, or breast cancer. Then, when the scientists look at fraternal twins, who don’t have the same DNA, they find a concordance as low as 0 percent and as high as 10 percent. That makes ASD strongly genetic.
If autism is partly genetic, should there be prenatal testing to determine if a fetus is autistic?
That is a huge ethical question, but perhaps it’s premature. We know that schizophrenia, bipolar disorder, breast cancer, and many other disorders have a strong genetic component, but they cannot be tested for in the womb. Multigenic complex disorders are very different from, say, Down syndrome, which is an identifiable mutation in which there is extra genetic material (a twenty-first chromosome), so it can be tested for. Autism is a totally different kind of condition.
In explaining how disease diagnosis is culturally dependent, you draw from many cultures and countries, including the Navajo and family lines in China and Peru. What are two of the most vivid examples in your mind?
The Korean case is one of the most fascinating to me. This is a country in which scientists and doctors and government officials have said that autism is a rare or nearly nonexistent disorder in Korea. The school and clinic records support that contention, because one seldom finds any mention of anyone with “autism.” Autism, when it is diagnosed, is highly stigmatizing because it is seen as a genetic disorder. If a disorder is genetic, the family feels that the entire family is damaged, and this brings shame and stigma. So parents would rather see themselves as bad parents who caused autism in their child through bad parenting than see the disorder as genetic. This is the opposite of what happened in the U.S., where mothers and fathers used to be blamed, but we now see the disorder as genetic. At any rate, I went into Korea with a team of epidemiologists and psychiatrists and psychologists, and we have screened thirty thousand kids and done extensive testing. And we’re finding lots of autism. The kids just are not called autistic. They are undiagnosed or diagnosed with something else. So, in Korea, we’re seeing a culturally different version of what has already happened in the U.S. and higher prevalence rates in Korea are on their way: not because autism is new as a condition, but because autism is new as a concept.
Wednesday, January 9, 2008
College Planning for Students - January 24
Hewlett Woodmere SEPTA will be holding an open forum on January 24, 2008 at the Woodmere Education Center, One Johnson Place Woodmere, at 7:30 pm. All are welcome. The topic under discussion is College Planning for Students with Disabilities. VESID (vocational and educational services for individuals with Disabilities) will also be discussed.
Tuesday, January 8, 2008
AHA’s Annual Spring Conference
Save the Date! Save the Date! Save the Date! Save the Date!WHAT: AHA’s Annual Spring Conference
Issues in Independent Living for Adolescents and Adults on the Autism Spectrum
WHEN: Sunday, April 13, 2008
WHERE: Ruth S. Harley University Center, Adelphi University, Garden City, New York
TIME: 8:00am – 4:30pm
WHO SHOULD ATTEND: Family Members, Individuals on the Autism Spectrum, Educators and Professionals
OUR SPEAKERS: This year we expect a fabulous turnout of speakers, panelists and facilitators including keynote Peter Gerhardt, Lynda Geller, Stephen Shore, Zosia Zaks, Karl Wittig, Valerie Gaus, Michael John Carley and many more.
OUR WORKSHOPS: Among the topics we will cover this year will be special interest travel, understanding different therapies, choosing a psychiatrist, more about conversation, and many more.ABOUT THE CONFERENCE: Our mission is to increase awareness of the countless challenges and difficulties individuals on the autism spectrum face as adults and to assist in their independence. The conference will focus on establishing effective systems of supports and services from transition through adulthood. For information about the AHA Association and more information about our previous conferences, visit www.ahaNY.org. More info to be posted shortly!
Be sure to join the AHA e-list to get all our mailings.
http://www.ahany.org/subc.htm
Become a member of AHA. This supports us and gives you discounts to our conferences and copies of our newsletter.
http://www.ahany.org/ab_app.htm
The spring newsletter will be a special edition – our 20th anniversary edition with special articles from all our Advisory board members (Tony Attwood, Valerie Gaus, Lynda Geller, Jerry Newport, Michael John Carley, John Pomeroy, Peter Gerhardt, Marty Schwartzman, May-Lynn Andresen, Diane Adreon, Ami Klin, Michelle Dunn, V. Mark Durand and Brenda Myles). Free to members.
Issues in Independent Living for Adolescents and Adults on the Autism Spectrum
WHEN: Sunday, April 13, 2008
WHERE: Ruth S. Harley University Center, Adelphi University, Garden City, New York
TIME: 8:00am – 4:30pm
WHO SHOULD ATTEND: Family Members, Individuals on the Autism Spectrum, Educators and Professionals
OUR SPEAKERS: This year we expect a fabulous turnout of speakers, panelists and facilitators including keynote Peter Gerhardt, Lynda Geller, Stephen Shore, Zosia Zaks, Karl Wittig, Valerie Gaus, Michael John Carley and many more.
OUR WORKSHOPS: Among the topics we will cover this year will be special interest travel, understanding different therapies, choosing a psychiatrist, more about conversation, and many more.ABOUT THE CONFERENCE: Our mission is to increase awareness of the countless challenges and difficulties individuals on the autism spectrum face as adults and to assist in their independence. The conference will focus on establishing effective systems of supports and services from transition through adulthood. For information about the AHA Association and more information about our previous conferences, visit www.ahaNY.org. More info to be posted shortly!
Be sure to join the AHA e-list to get all our mailings.
http://www.ahany.org/subc.htm
Become a member of AHA. This supports us and gives you discounts to our conferences and copies of our newsletter.
http://www.ahany.org/ab_app.htm
The spring newsletter will be a special edition – our 20th anniversary edition with special articles from all our Advisory board members (Tony Attwood, Valerie Gaus, Lynda Geller, Jerry Newport, Michael John Carley, John Pomeroy, Peter Gerhardt, Marty Schwartzman, May-Lynn Andresen, Diane Adreon, Ami Klin, Michelle Dunn, V. Mark Durand and Brenda Myles). Free to members.
Pros and Cons of Giving Adult Drugs to Children
By NEIL GENZLINGER
Published: January 8, 2008
The attention-deficit generation has been supplanted by the bipolar generation, we learn in Tuesday night’s “Frontline” on PBS. And overmedication of children is not the only concern these days. Parents may now be turning their youngsters into guinea pigs.
Skip to next paragraph
Frontline
The Koontz family on “The Medicated Child.” DJ, 4, in front, takes medicine for bipolar disorder.
The report, “The Medicated Child,” revisits territory “Frontline” first examined in 2001, raising some familiar warning flags and some new ones. But it’s not a knee-jerk treatment. As the program points out, there are pros as well as cons to the increased use of prescription drugs on children.
The trendy diagnosis of the moment for children, we’re told, is bipolar disorder, that drastic series of shifts in mood and energy once thought to be an adults-only problem. And rather than giving troubled children relatively familiar antidepressants, there is a corresponding move toward treating them with less predictable, less thoroughly studied antipsychotic drugs.
“We’ve taken a drug that has very limited risk and replaced these drugs, often with a class of drugs that have unknown efficacy but quite well-known risks,” says Thomas R. Insel, director of the National Institute of Mental Health. “And I’m not sure that that’s progress.”
Medical professionals talk forthrightly about the guesswork involved in treating children who exhibit bipolar behavior: the constant switching of medications and tweaking of dosages. And, as the program notes, if a problem emerges with a drug, even the seemingly obvious step of issuing a government warning is perilous. The warning might leave children who really need that particular medication less likely to get it; the pendulum swings from risky overuse to dangerous underuse.
The obligatory children flit through the program, possibly to detrimental effect. We mostly see well-behaved youngsters doing what children do; in other words, the “after” picture. Anyone who has not experienced a truly troubled child “before” — before the parents sought the help that medications can bring — may think the parents of the ones seen here guilty of needlessly drugging their youngsters. But as with most aspects of this issue, things are rarely that simple.
FRONTLINE
The Medicated Child
On most PBS stations on Tuesday night (check local listings).
Marcela Gaviria, writer and producer; Will Cohen, co-producer. A Frontline production with RAINMedia Inc. Frontline is produced by WGBH Boston.
Published: January 8, 2008
The attention-deficit generation has been supplanted by the bipolar generation, we learn in Tuesday night’s “Frontline” on PBS. And overmedication of children is not the only concern these days. Parents may now be turning their youngsters into guinea pigs.
Skip to next paragraph
Frontline
The Koontz family on “The Medicated Child.” DJ, 4, in front, takes medicine for bipolar disorder.
The report, “The Medicated Child,” revisits territory “Frontline” first examined in 2001, raising some familiar warning flags and some new ones. But it’s not a knee-jerk treatment. As the program points out, there are pros as well as cons to the increased use of prescription drugs on children.
The trendy diagnosis of the moment for children, we’re told, is bipolar disorder, that drastic series of shifts in mood and energy once thought to be an adults-only problem. And rather than giving troubled children relatively familiar antidepressants, there is a corresponding move toward treating them with less predictable, less thoroughly studied antipsychotic drugs.
“We’ve taken a drug that has very limited risk and replaced these drugs, often with a class of drugs that have unknown efficacy but quite well-known risks,” says Thomas R. Insel, director of the National Institute of Mental Health. “And I’m not sure that that’s progress.”
Medical professionals talk forthrightly about the guesswork involved in treating children who exhibit bipolar behavior: the constant switching of medications and tweaking of dosages. And, as the program notes, if a problem emerges with a drug, even the seemingly obvious step of issuing a government warning is perilous. The warning might leave children who really need that particular medication less likely to get it; the pendulum swings from risky overuse to dangerous underuse.
The obligatory children flit through the program, possibly to detrimental effect. We mostly see well-behaved youngsters doing what children do; in other words, the “after” picture. Anyone who has not experienced a truly troubled child “before” — before the parents sought the help that medications can bring — may think the parents of the ones seen here guilty of needlessly drugging their youngsters. But as with most aspects of this issue, things are rarely that simple.
FRONTLINE
The Medicated Child
On most PBS stations on Tuesday night (check local listings).
Marcela Gaviria, writer and producer; Will Cohen, co-producer. A Frontline production with RAINMedia Inc. Frontline is produced by WGBH Boston.
Yesodot's Family Trip to Israel, June 2008
Have you ever dreamed of a special family trip to Israel for your family butwere afraid of the challenges you would face because of your child'sdisability? Thought about visiting Jerusalem and praying at the WesternWall, participating in an archaeological dig, experiencing life as it waslived during Talmud times, floating in the Dead Sea, riding to the top ofMasada, and eating a traditional Druze meal? Have you wanted to experiencethe sophistication of Tel Aviv, take in the sun on a Mediterranean beach,see the sights in Boston's sister city of Haifa? Experience the magic ofIsrael with Yesodot and form a deeper connection to your Jewish identity ona 10 day trip designed just for families challenged by disability, startingJune 27, 2008 in Israel. For more information contact Sue Wolf-Fordham,director@yesodot.org or (617) 399-3299. We have a limited number of spacesleft.
TODAY'S MAN, it will be featured on PBS's Independent Lens
This might be of interest to families who could tape it (the film is being aired on Shabbos)
If you have not already seen the wonderful documentary, TODAY'S MAN, it will be featured on PBS's Independent Lens this Friday January 11th at 10pm. TODAY'S MAN follows Nicky Gottlieb (a member of Adaptations), a former child genius diagnosed with Asperger Syndrome over the course of six years as he struggles to leave the safety of his family's home and find his own place in the world.
Below is the link for more information about the film.
http://www.pbs.org/independentlens/todaysman/
If you have not already seen the wonderful documentary, TODAY'S MAN, it will be featured on PBS's Independent Lens this Friday January 11th at 10pm. TODAY'S MAN follows Nicky Gottlieb (a member of Adaptations), a former child genius diagnosed with Asperger Syndrome over the course of six years as he struggles to leave the safety of his family's home and find his own place in the world.
Below is the link for more information about the film.
http://www.pbs.org/independentlens/todaysman/
Monday, January 7, 2008
Parents gain in dispute with Shen - Federal judge rules against district in suit over tuition at out-of-state school for special education student
By RICK KARLIN, Capitol bureau Click byline for more stories by writer. First published: Friday, January 4, 2008
ALBANY -- A federal judge has issued what lawyers describe as a rebuke to the Shenendehowa school district as well as the state Education Department in a lawsuit over the district's refusal to reimburse a couple for their child's special education costs.
The district maintains that the parents of a mentally disabled child shouldn't be reimbursed some $40,000 in tuition at a special New Hampshire school since they failed to visit another school in Connecticut that district officials wanted to consider. That, contended Shenendehowa officials, showed that the parents weren't fully cooperating with efforts to help their child.
But the parents, who are not identified in court documents, were not told they had to travel to the Connecticut school until Aug. 27, 2004, just days before the school year was to commence.
In addition to ruling against Shenendehowa, U.S. District Judge Lawrence Kahn on Wednesday also said that the Education Department's state review officer had "incorrectly characterized the facts" in this case.
The district could appeal it but whether that would be the case remained unclear Thursday.
The ruling is significant, said lawyers, because the Education Department has been under growing pressure from parents and lawyers who charge that the review officer, Paul Kelly, has been too quick to side with school districts in disputes over special education costs. Those criticisms, though, come as federal laws have become more favorable to school districts in such disputes.
Additionally, the state Commission of Investigation, which looks at public corruption and fraud, has been probing whether the Education Department has improperly denied reimbursements to students with disabilities who need special placements. That probe was first reported in October in the Times Union.
The case Kahn ruled on Wednesday dates to 2004, when the parent of a then-13 year-old student enrolled the youngster, identified as A.V., in Hampshire Country School, a New Hampshire facility for youngsters with emotional disturbances and learning disabilities.
The child was diagnosed with "pervasive developmental disorder" and required "constant adult support" to function in school, according to court papers.
The parents settled on Hampshire Country School, but the district also wanted them to look at a school in Connecticut.
When A.V.'s parents were initially denied reimbursement because they didn't visit the Connecticut school, they appealed the decision to a third party, known as an "impartial hearing officer," who ruled on the family's behalf. The district then started its own appeal, going to the state review officer, who sided with Shenendehowa.
A.V.'s parents then hired a lawyer, H. Jeffrey Marcus, who took the case to federal court.
Typically, Marcus said, parents lose these type of appeals since the courts are required to "give deference" to, or err on the side of, hearing officers. The fact that A.V.'s parents won this case, Marcus contends, proves what he and other disability lawyers have complained about: that Kelly has sided too often with school districts.
Kelly "mischaracterized the facts," said another lawyer familiar with the case, Andrew Cuddy, who like Marcus, has long complained about Kelly's rulings. "That's exactly what I've been saying is going on there."
Education Department spokesman Tom Dunn stressed the lawsuit was between the family and Shenendehowa, not his agency.
"The judge had to pick a winner and he's finding a weakness in the argument," said Dunn. "This is a disagreement, not a rebuke."
Dunn added that Kahn in 2006 upheld two of Kelly's decisions.
Jay Worona, counsel for the state School Boards Association, noted the district wasn't opposed to paying tuition; they simply wanted to explore the alternate school in Connecticut.
Shenendehowa officials didn't return a request for comment on Thursday.
Karlin can be reached at 454-5758 or by e-mail at rkarlin@timesunion.com.
ALBANY -- A federal judge has issued what lawyers describe as a rebuke to the Shenendehowa school district as well as the state Education Department in a lawsuit over the district's refusal to reimburse a couple for their child's special education costs.
The district maintains that the parents of a mentally disabled child shouldn't be reimbursed some $40,000 in tuition at a special New Hampshire school since they failed to visit another school in Connecticut that district officials wanted to consider. That, contended Shenendehowa officials, showed that the parents weren't fully cooperating with efforts to help their child.
But the parents, who are not identified in court documents, were not told they had to travel to the Connecticut school until Aug. 27, 2004, just days before the school year was to commence.
In addition to ruling against Shenendehowa, U.S. District Judge Lawrence Kahn on Wednesday also said that the Education Department's state review officer had "incorrectly characterized the facts" in this case.
The district could appeal it but whether that would be the case remained unclear Thursday.
The ruling is significant, said lawyers, because the Education Department has been under growing pressure from parents and lawyers who charge that the review officer, Paul Kelly, has been too quick to side with school districts in disputes over special education costs. Those criticisms, though, come as federal laws have become more favorable to school districts in such disputes.
Additionally, the state Commission of Investigation, which looks at public corruption and fraud, has been probing whether the Education Department has improperly denied reimbursements to students with disabilities who need special placements. That probe was first reported in October in the Times Union.
The case Kahn ruled on Wednesday dates to 2004, when the parent of a then-13 year-old student enrolled the youngster, identified as A.V., in Hampshire Country School, a New Hampshire facility for youngsters with emotional disturbances and learning disabilities.
The child was diagnosed with "pervasive developmental disorder" and required "constant adult support" to function in school, according to court papers.
The parents settled on Hampshire Country School, but the district also wanted them to look at a school in Connecticut.
When A.V.'s parents were initially denied reimbursement because they didn't visit the Connecticut school, they appealed the decision to a third party, known as an "impartial hearing officer," who ruled on the family's behalf. The district then started its own appeal, going to the state review officer, who sided with Shenendehowa.
A.V.'s parents then hired a lawyer, H. Jeffrey Marcus, who took the case to federal court.
Typically, Marcus said, parents lose these type of appeals since the courts are required to "give deference" to, or err on the side of, hearing officers. The fact that A.V.'s parents won this case, Marcus contends, proves what he and other disability lawyers have complained about: that Kelly has sided too often with school districts.
Kelly "mischaracterized the facts," said another lawyer familiar with the case, Andrew Cuddy, who like Marcus, has long complained about Kelly's rulings. "That's exactly what I've been saying is going on there."
Education Department spokesman Tom Dunn stressed the lawsuit was between the family and Shenendehowa, not his agency.
"The judge had to pick a winner and he's finding a weakness in the argument," said Dunn. "This is a disagreement, not a rebuke."
Dunn added that Kahn in 2006 upheld two of Kelly's decisions.
Jay Worona, counsel for the state School Boards Association, noted the district wasn't opposed to paying tuition; they simply wanted to explore the alternate school in Connecticut.
Shenendehowa officials didn't return a request for comment on Thursday.
Karlin can be reached at 454-5758 or by e-mail at rkarlin@timesunion.com.
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