Math and numbers are easy for 10-year-old Alex Lee. He can tell you what pi is out to 100 digits.
But Alex doesn't do so well with chitchat. On a late fall day, he meets with psychologist Brian Freedman.
Alex asks Freedman if he knows how to play the piano.
Freedman starts to reply that the two weren't having a conversation about pianos, but Alex interrupts him: "What instrument do you play?"
"Hang on," Freedman repeats, "were we talking about me playing the piano?"
"No."
"What were we talking about?" Freedman asks again.
"What instrument do you play?" Alex continues.
"Were we talking about me playing instruments?" says Freedman.
Finally, Alex replies, "No."
"No," Freedman agrees.
Social Studies
For children like Alex with autism, social interactions are a struggle. But Freedman is part of a team of researchers at Baltimore's Kennedy Krieger Institute that has developed a course to help these kids improve their social skills. The program is called Building Up Development of Socialization, or BUDS.
Alex says he is doing better than he used to since starting the program several months ago.
"I had a perfect week last week," he tells Freedman. "I was never going into the red zone." That refers to a number of behaviors that get Alex in trouble.
Alex and several other children with mild autism have been meeting every week with Freedman and autism specialist Elizabeth Stripling. The idea is to teach the social skills that most kids pick up without even thinking about it.
Freedman says the gap between kids with autism and other kids isn't so wide when they're in kindergarten. But after that it can become a chasm.
The kids in Alex's group are between 10 and 12 years old. "They're starting to move toward middle school," says Freedman, "and the social rules are changing all around them, and so it's incredibly hard for them to keep up. So that's why we need to have a group like this."
Conversation 101
During the sessions, Freedman and Stripling give pointers on how to do things as basic as keeping a conversation going.
For instance, they're told, if someone says he likes music, ask what kind of music. Freedman and Stripling remind the kids to make eye contact and listen when someone else is talking.
Freedman says it's all about coaching and practice, not just rules.
"One of the problems that kids with autism can run into is that when they're taught very rigid rules, they only stick to those rules," Freedman explains. "So we try to help them understand some nuances within interaction."
On this November afternoon, only two boys have shown up, Alex and another 10-year-old, named Joseph Santana.
A few minutes into the session, Joseph says he wants to talk about something that happened to him. Freedman and Stripling help Alex respond appropriately.
"On Sunday, I went to the emergency room," Joseph says.
"Oh, my gosh," Freedman replies.
"Because I couldn't breathe," Joseph continues.
Stripling jumps in: "Oh, my goodness!"
Then Alex takes their cue, "Were you dying or what? So sorry to hear that."
Freedman praises Alex for picking up the conversation and asks him what other questions might be appropriate to ask Joseph about his trip to the ER.
It's not completely spontaneous or natural. But Freedman says the conversation shows how far Alex has come. He is clearly listening, and his responses even suggest empathy.
And for Joseph, just telling the story is a big achievement. He has trouble communicating with other kids. But he has been trying hard with the children he's met in these sessions.
Freedman says the first thing Joseph did after getting out of the hospital was send an e-mail to the entire group.
"The e-mail wasn't just to check in and say hi, but it provided context to say that something had happened to him," Freedman says. "The next sentence was followed by, 'I'm OK.' And all of that was followed up by emoticons that showed the feelings that went along with that. So I would say especially for a kid like Joseph, that was tremendous progress."
Joseph grew up loving The History Channel, but hating school.
"Kids would pick on him, beat him up. You know, they were really not very kind to him at all," says his mother, Kathleen Santana.
When kids at school handed out invitations to birthday parties, Joseph never received any.
"In the beginning he just wasn't aware," Kathleen Santana says. "But now that he is getting older and learning more that that is happening, he is becoming more aware, and I think that is a hurtful situation for him."
Eventually, Santana decided to teach Joseph at home.
Alex has been doing OK at school. But his father, Hugh Lee, says his son is lonely.
"He wants to make friends with other kids. I think it's just a disability in him that he doesn't know how to," says Lee.
Final Exam
After many weeks of practice, Alex and Joseph are getting ready for a kind of final exam — at the Baltimore aquarium.
The boys spend a December afternoon at the Australia exhibit, checking out animals and asking each other questions about what they're seeing and what the animals are doing.
Their parents, meanwhile, are awarding points when the boys do well and taking points away when they don't.
At the end of the visit, the scores are tallied. Alex is told that he gets a lot of points for initiating conversations. But he also has a few deducted.
This is the sort of conversation Alex likes. It's about numbers.
"OK, so 18 minus 3 equals 15. So I have more than 10, and I have exactly 15. So a large prize," Alex happily says.
For kids like Alex, the stakes are high. They're more than smart enough to go to college, find jobs and live on their own.
But Freedman says his goal is to make sure they acquire the social skills to accomplish those things.
Thursday, January 15, 2009
Thursday, July 31, 2008
'Like going to Disney World every Saturday'
Horse-riding program has healing effects on Waukegan boys coping with disorders
July 31, 2008
BY CHARLIE ADELMAN
Despite suffering from numerous health crises, two Waukegan boys have found solace in the unlikely therapy of horseback riding.
For Evan Dustan, 9, and his 2½-year-old brother Ian, life hasn't been such an easy ride.
At age 3, Evan was discovered to have autism, and just two weeks ago he was diagnosed with acute myelogenous leukemia.
His brother, meanwhile, has suffered from an undiagnosed digestion problem that prohibits his stomach from processing any food. He has been connected to feeding tubes since shortly after he was born.
Both boys have been going through therapeutic horseback riding sessions at the Midwest Therapeutic Riding Program in Racine, Wis. since they were toddlers.
"It's a place where kids don't have disabilities and kids are kids," said the boys' mother, Jamie. "It's the best therapy we've ever given them. Ian said his first word on a horse."
For the family, who lives in Waukegan, Evan's recent diagnosis has been a huge blow.
"We were not even prepared," Jamie said. "We were so ignorant, we had no concept of what we were looking at."
Only a day after Evan was diagnosed, Jamie and her husband Chris took the boys up to Milwaukee to begin Evan's treatment.
"Evan's had a really rough beginning," Jamie said. "He had a seizure disorder that has resurfaced since undergoing treatment."
Playing supermom to her children, Jamie admits Evan's latest developments have been a struggle.
"Having a second child already medically fragile, this complicates things a bit," she said.
To ease their stay in Milwaukee, the family has moved into a suite at a Ronald McDonald house there and will likely stay until January while Evan goes through chemotherapy.
With all the recent tribulations, it's not surprising Evan is looking forward to getting back on a horse, although, "it's going to be a little while," said Jamie.
"The program is really a place where kids' dreams come true," she said. "It's been like going to Disney World every Saturday. It's been life-changing for the entire family."
July 31, 2008
BY CHARLIE ADELMAN
Despite suffering from numerous health crises, two Waukegan boys have found solace in the unlikely therapy of horseback riding.
For Evan Dustan, 9, and his 2½-year-old brother Ian, life hasn't been such an easy ride.
At age 3, Evan was discovered to have autism, and just two weeks ago he was diagnosed with acute myelogenous leukemia.
His brother, meanwhile, has suffered from an undiagnosed digestion problem that prohibits his stomach from processing any food. He has been connected to feeding tubes since shortly after he was born.
Both boys have been going through therapeutic horseback riding sessions at the Midwest Therapeutic Riding Program in Racine, Wis. since they were toddlers.
"It's a place where kids don't have disabilities and kids are kids," said the boys' mother, Jamie. "It's the best therapy we've ever given them. Ian said his first word on a horse."
For the family, who lives in Waukegan, Evan's recent diagnosis has been a huge blow.
"We were not even prepared," Jamie said. "We were so ignorant, we had no concept of what we were looking at."
Only a day after Evan was diagnosed, Jamie and her husband Chris took the boys up to Milwaukee to begin Evan's treatment.
"Evan's had a really rough beginning," Jamie said. "He had a seizure disorder that has resurfaced since undergoing treatment."
Playing supermom to her children, Jamie admits Evan's latest developments have been a struggle.
"Having a second child already medically fragile, this complicates things a bit," she said.
To ease their stay in Milwaukee, the family has moved into a suite at a Ronald McDonald house there and will likely stay until January while Evan goes through chemotherapy.
With all the recent tribulations, it's not surprising Evan is looking forward to getting back on a horse, although, "it's going to be a little while," said Jamie.
"The program is really a place where kids' dreams come true," she said. "It's been like going to Disney World every Saturday. It's been life-changing for the entire family."
Autism swim program designed to save lives
Thursday, July 31, 2008
COURTESY SOMERSET HILLS YMCA
Statistics show that the highest rate of accidental death of autistic children is through drowning.
In response to this disturbing fact, in January, 2008, children from the Mount Prospect Pre-School Autistic Program (ages 3-5 years) began swim lessons each week at the Somerset Hills YMCA using the ABA (Applied Behavioral Analysis) methodology, a systematic step-by-step approach to learning that is implemented specifically in teaching children with autism.
The cooperative program between the YMCA and the Bernards Township School District is the brainchild of Jean O'Connell, Supervisor of Special Education, Bernards Township Schools, and Anna Scanniello, Director of Aquatics and Safety at the Somerset Hills YMCA in Basking Ridge.
Named ABA Swimming -- A Better Approach to Swimming -- the program is based on the ABA methodology that extends the use of the principles of applied behavior analysis to teaching children with autism. Lessons are held at the Somerset Hills YMCA training pool, where lead teacher, Allyson Sudol, pre-school Speech pathologist and former competitive swimmer, has developed a curriculum, based on her 12 years of experience teaching children with developmental difficulties.
With additional swim instructors and pool space provided at no cost by the YMCA, children are learning this vital life skill.
At the same time, the children learn essential social skills as they ride the school bus, change in and out of swimwear, navigate their way around the pool, and interact with instructors.
"We must continue to enable families to better face autism by providing the support services that they desperately need," stated Dr. Joseph Morandi, board-certified family physician and chairman of the Medical Committee for the Somerset Hills YMCA. "The ABA swimming program teaches essential skills, both in and out of the water, which these children might not otherwise learn. When you think about the YMCA's core principles of helping the people in our community grow in spirit, mind and body, this program is a perfect example that encompasses all of those values and leaves us with that warm sense of accomplishment and purpose."
Anna Scanniello of the YMCA insists that teaching the children to swim is a gift to the instructor and child alike and, at the same time, allows the children to increase their own independence for community involvement.
"This pilot program will hopefully be the first of many to address this issue," adds Scanniello.
Optimism is high that this program's success will encourage the widespread development of similar programs and trigger more grants to help underwrite operating costs such as instructor training, transportation, etc., so that other age groups can benefit from this opportunity.
For more information, visit www.somersethillsymca.org or e-mail Anna Scanniello at ascanniello@somersethillsymca.org.
The Somerset Hills YMCA is a community service, mission based, 501c3 non-profit organization of dedicated staff and volunteers, serving all individuals regardless of gender, age, race, faith, ethnic heritage, mental/physical ability or economic circumstance.
Each year, the Somerset Hills YMCA provides over $550,000 in financial assistance and program subsidy through the Strong Kids Campaign. Located in Basking Ridge and dedicated to helping people grow in spirit, mind and body, the Somerset Hills YMCA is guided by the core principles of caring, honesty, respect and responsibility.
COURTESY SOMERSET HILLS YMCA
Statistics show that the highest rate of accidental death of autistic children is through drowning.
In response to this disturbing fact, in January, 2008, children from the Mount Prospect Pre-School Autistic Program (ages 3-5 years) began swim lessons each week at the Somerset Hills YMCA using the ABA (Applied Behavioral Analysis) methodology, a systematic step-by-step approach to learning that is implemented specifically in teaching children with autism.
The cooperative program between the YMCA and the Bernards Township School District is the brainchild of Jean O'Connell, Supervisor of Special Education, Bernards Township Schools, and Anna Scanniello, Director of Aquatics and Safety at the Somerset Hills YMCA in Basking Ridge.
Named ABA Swimming -- A Better Approach to Swimming -- the program is based on the ABA methodology that extends the use of the principles of applied behavior analysis to teaching children with autism. Lessons are held at the Somerset Hills YMCA training pool, where lead teacher, Allyson Sudol, pre-school Speech pathologist and former competitive swimmer, has developed a curriculum, based on her 12 years of experience teaching children with developmental difficulties.
With additional swim instructors and pool space provided at no cost by the YMCA, children are learning this vital life skill.
At the same time, the children learn essential social skills as they ride the school bus, change in and out of swimwear, navigate their way around the pool, and interact with instructors.
"We must continue to enable families to better face autism by providing the support services that they desperately need," stated Dr. Joseph Morandi, board-certified family physician and chairman of the Medical Committee for the Somerset Hills YMCA. "The ABA swimming program teaches essential skills, both in and out of the water, which these children might not otherwise learn. When you think about the YMCA's core principles of helping the people in our community grow in spirit, mind and body, this program is a perfect example that encompasses all of those values and leaves us with that warm sense of accomplishment and purpose."
Anna Scanniello of the YMCA insists that teaching the children to swim is a gift to the instructor and child alike and, at the same time, allows the children to increase their own independence for community involvement.
"This pilot program will hopefully be the first of many to address this issue," adds Scanniello.
Optimism is high that this program's success will encourage the widespread development of similar programs and trigger more grants to help underwrite operating costs such as instructor training, transportation, etc., so that other age groups can benefit from this opportunity.
For more information, visit www.somersethillsymca.org or e-mail Anna Scanniello at ascanniello@somersethillsymca.org.
The Somerset Hills YMCA is a community service, mission based, 501c3 non-profit organization of dedicated staff and volunteers, serving all individuals regardless of gender, age, race, faith, ethnic heritage, mental/physical ability or economic circumstance.
Each year, the Somerset Hills YMCA provides over $550,000 in financial assistance and program subsidy through the Strong Kids Campaign. Located in Basking Ridge and dedicated to helping people grow in spirit, mind and body, the Somerset Hills YMCA is guided by the core principles of caring, honesty, respect and responsibility.
Penn State Conference to Provide Lessons for Educators and Families of Kids with Autism
Thousands expected to attend as the number of diagnosed autism cases continues to increase
UNIVERSITY PARK, Pa., July 30 /PRNewswire/ -- Educators, interested professionals and families of autistic children who hope to create effective educational programming will descend on Penn State's 2008 National Autism Conference, August 4-8 at the Penn Stater Conference Center.
According to the latest figures by the U.S. Department of Education, the number of diagnosed autism cases has increased 172 percent since 1990. The amount of new cases continues to be a challenge for those who are educating and treating people with autism.
"As awareness of autism continues to grow, this conference will remain a vital forum for educators, providers and families to discuss the latest findings in treating and educating students with autism spectrum disorders," said Nancy Eckard, conference planner. "We host close to 400 conferences and meetings at the Penn Stater and the Autism Conference is one of the biggest."
The conference, which averages approximately 2,500 participants, will feature experts in autism, educators, autism advocates and people with autism and their family members. Speakers at this year's conference include:
-- Eustacia Cutler, author and speaker, whose studies in autism and retardation led to two television documentaries: The Disquieted, on disturbed children, and The Innocents. Her book, A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story, is in its third printing.
-- Rachel Marie Brooks, Miss Pennsylvania 2007, promoted her platform -- "Autism Awareness: Unlocking the Mystery" -- across the state. A graduate student in the University of Pennsylvania's Fels Institute of Government, she advocates for legislation and policies designed to benefit the autism community at the local, state and federal levels.
-- Joe Gans will share his challenges -- and successes -- as a 20-year-old Penn State student with autism.
The conference is sponsored by the Pennsylvania Department of Education. Information about the conference is available at http://www.outreach.psu.edu/programs/Autism/ online.
UNIVERSITY PARK, Pa., July 30 /PRNewswire/ -- Educators, interested professionals and families of autistic children who hope to create effective educational programming will descend on Penn State's 2008 National Autism Conference, August 4-8 at the Penn Stater Conference Center.
According to the latest figures by the U.S. Department of Education, the number of diagnosed autism cases has increased 172 percent since 1990. The amount of new cases continues to be a challenge for those who are educating and treating people with autism.
"As awareness of autism continues to grow, this conference will remain a vital forum for educators, providers and families to discuss the latest findings in treating and educating students with autism spectrum disorders," said Nancy Eckard, conference planner. "We host close to 400 conferences and meetings at the Penn Stater and the Autism Conference is one of the biggest."
The conference, which averages approximately 2,500 participants, will feature experts in autism, educators, autism advocates and people with autism and their family members. Speakers at this year's conference include:
-- Eustacia Cutler, author and speaker, whose studies in autism and retardation led to two television documentaries: The Disquieted, on disturbed children, and The Innocents. Her book, A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story, is in its third printing.
-- Rachel Marie Brooks, Miss Pennsylvania 2007, promoted her platform -- "Autism Awareness: Unlocking the Mystery" -- across the state. A graduate student in the University of Pennsylvania's Fels Institute of Government, she advocates for legislation and policies designed to benefit the autism community at the local, state and federal levels.
-- Joe Gans will share his challenges -- and successes -- as a 20-year-old Penn State student with autism.
The conference is sponsored by the Pennsylvania Department of Education. Information about the conference is available at http://www.outreach.psu.edu/programs/Autism/ online.
Hundreds attend Autism Summit in Temecula
By CLAUDIA BUSTAMANTE
The Press-Enterprise
TEMECULA - There's no magic bullet for autism, but family and friends of children who have the condition learned Tuesday about various health therapies, research and communication methods.
Hundreds of people attended the area's first Autism Summit at Rancho Community Church in Temecula. The event drew more than 50 vendors, both local and from nearby counties.
There were tables from schools such as Oak Grove in Murrieta, lawyers specializing in special education, nutrition information and autism research centers.
The Press-Enterprise
TEMECULA - There's no magic bullet for autism, but family and friends of children who have the condition learned Tuesday about various health therapies, research and communication methods.
Hundreds of people attended the area's first Autism Summit at Rancho Community Church in Temecula. The event drew more than 50 vendors, both local and from nearby counties.
There were tables from schools such as Oak Grove in Murrieta, lawyers specializing in special education, nutrition information and autism research centers.
Parents, Professionals Share Experiences At Autism Summit
Just one year ago, Casandra Oldham's life was changed forever with one word: autism. Before that her then-two-and-a-half year old son was normal, she said.
"He had words, he put them together; he would play. He slowly regressed over the winter," Oldham said. "He got to the point where he would sit in the corner all day, chewing on his shirt and playing with the shadows that came in through the window. He lost all his words. He lost his communications skills. He lost his ability to play."
Her story was one of many shared during Monday night's Autism summit held in Lansdowne to focus attention on the needs of children with the brain development disorder and on proposed state legislation that could help families afford treatments.
Oldham said her family had only moved to the area about a year before her son's diagnosis. They started an applied behavior analysis program for her son, a costly treatment not covered by health insurance, but which has received much praise in recent years as an effective treatment for autism. When the family's car broke down and as bills began to pile up, they eventually had to shut off part of their water to continue paying for their son's treatments.
Oldham then watched as her second child, only 17 months old at the time, began to regress. He lost the ability to point, and to chew, she said. Her younger son was then tested for mitochondrial disease, and the test came back positive. She had her older son, then three years old, tested as well. His test also came back positive.
"They were born normal," Oldham said. "They acquired the mitochondrial condition that brought about their autism."
"Let me say this about the [applied behavioral analysis]: the ABA works on both my children. But I had to sit there, and I had to choose. Do I pay the $3,000 to have my kid potty trained, or do I ask if my child can speak?" she said. "These are the choices I had to make. Do I help my baby, who at least they caught sooner, and might have more hope, or do I help my three year old?"
After her sons' were diagnosed, Oldham turned to the community of parents with children suffering from autism, and was able to get help for her 17-month-old child this summer. Her three year old started school last year, and while she praised the teachers who work with her son, both she and the teachers know it is not enough, she said. But the cost of treatments is just too high.
"They're young, and they have potential," she said of her children, "but we just don't have the resources."
When she started her 17-month-old child's ABA treatments, the cost of 21 hours of treatment every week was $3,600 per month. Her doctor recommended 40 hours of treatment each week. To treat both of her children at the doctor's recommendations, her family would have to pay more than $14,000 every month.
Parents at Monday's Autism Summit also heard testimony from experts in the field of autism treatment about advances in treatments, and from state legislators backing a bill that would require insurance companies to provide coverage for autism treatment.
Jane Barbin was at the event representing the Association for Science in Autism Treatment. The association works to spread scientific information about the treatment of autism. Barbin spoke in favor of ABA treatments, citing studies by several task forces, including the New York State Department of Health of the Office of the U.S. Surgeon General.
"And what that office has said," Barbin said, referring to the Surgeon General's report, "is they have concluded that there is over 30 years ... demonstrating the effectiveness of applied behavioral analysis in decreasing inappropriate behaviors," such as aggression, hand-flapping, and non-functional vocal responses.
Barbin said the Surgeon General's Office also concluded ABA "is effective in increasing certain behaviors that are important," such as communication and social skills.
Delegates Robert Marshall (R-13), David Poisson (D-32), Thomas Rust (R-86), Charles Caputo (D-67), and Senator Mark Herring (D-33) attended the event, hosted by the Loudoun County Autism Network, and expressed their support for House Bill 83.
The bill, which was introduced by Marshall, after working with one of his constituents, originally sought to address the lack of insurance coverage for services for all children with developmental disabilities, but has since been amended to focus only on those children who have been diagnosed in the autism spectrum.
The bill was left in committee during last spring's session, but it has been regenerated with a public hearing anticipated in Richmond some time this fall.
"Every child is special. And we need to remember that providing these services is expensive, but it is an investment. And most importantly, it is an investment in children," Rust said Monday.
Children with autism who receive treatment early can eventually enter the work force, instead of becoming wards of the state, which would offset the costs of covering autism under insurance programs, he said.
Marshall spoke about how parents and advocates need to network to gather contacts from around the state who can petition local delegates and senators to support the bill, especially those on the State Corporation Commission's mandated benefits commission, and the commerce and labor committees in the House of Delegates and Senate.
Marshall was able to recruit four volunteers from the crowd to serve as phone organizers for northern, southern, western, and the tidewater regions of Virginia, and encouraged everyone present to give their information to Pat DiBari, a Lansdowne resident whose grassroots efforts spawned the Autism Summit and who founded The Loudoun Project, an online community and resource for parents of children with autism.
"Has everyone given their name and number and e-mail to Pat here?" Marshall asked during his speech. "If you haven't done it, you have to do it before you leave the room. You will not be allowed to leave to room until you do so," he said, drawing much laughter from the audience.
James Lafferty, president of the Autism Advocacy Coalition whose son was diagnosed with autism at the age of two and has undergone ABA treatments, spoke to the crowd about his own experiences with autism.
Lafferty told the audience about the anger he experienced when his son's teacher told him that his son did not need speech therapy, because he could not speak, and the pride he felt about being able to drop his son off for the his first day of regular kindergarten this fall.
He agreed with Marshall's ideas for organizing people at a local level to help influence legislators when it comes to autism matters, saying the audience would "have to be ready for the fight of our lives."
"He had words, he put them together; he would play. He slowly regressed over the winter," Oldham said. "He got to the point where he would sit in the corner all day, chewing on his shirt and playing with the shadows that came in through the window. He lost all his words. He lost his communications skills. He lost his ability to play."
Her story was one of many shared during Monday night's Autism summit held in Lansdowne to focus attention on the needs of children with the brain development disorder and on proposed state legislation that could help families afford treatments.
Oldham said her family had only moved to the area about a year before her son's diagnosis. They started an applied behavior analysis program for her son, a costly treatment not covered by health insurance, but which has received much praise in recent years as an effective treatment for autism. When the family's car broke down and as bills began to pile up, they eventually had to shut off part of their water to continue paying for their son's treatments.
Oldham then watched as her second child, only 17 months old at the time, began to regress. He lost the ability to point, and to chew, she said. Her younger son was then tested for mitochondrial disease, and the test came back positive. She had her older son, then three years old, tested as well. His test also came back positive.
"They were born normal," Oldham said. "They acquired the mitochondrial condition that brought about their autism."
"Let me say this about the [applied behavioral analysis]: the ABA works on both my children. But I had to sit there, and I had to choose. Do I pay the $3,000 to have my kid potty trained, or do I ask if my child can speak?" she said. "These are the choices I had to make. Do I help my baby, who at least they caught sooner, and might have more hope, or do I help my three year old?"
After her sons' were diagnosed, Oldham turned to the community of parents with children suffering from autism, and was able to get help for her 17-month-old child this summer. Her three year old started school last year, and while she praised the teachers who work with her son, both she and the teachers know it is not enough, she said. But the cost of treatments is just too high.
"They're young, and they have potential," she said of her children, "but we just don't have the resources."
When she started her 17-month-old child's ABA treatments, the cost of 21 hours of treatment every week was $3,600 per month. Her doctor recommended 40 hours of treatment each week. To treat both of her children at the doctor's recommendations, her family would have to pay more than $14,000 every month.
Parents at Monday's Autism Summit also heard testimony from experts in the field of autism treatment about advances in treatments, and from state legislators backing a bill that would require insurance companies to provide coverage for autism treatment.
Jane Barbin was at the event representing the Association for Science in Autism Treatment. The association works to spread scientific information about the treatment of autism. Barbin spoke in favor of ABA treatments, citing studies by several task forces, including the New York State Department of Health of the Office of the U.S. Surgeon General.
"And what that office has said," Barbin said, referring to the Surgeon General's report, "is they have concluded that there is over 30 years ... demonstrating the effectiveness of applied behavioral analysis in decreasing inappropriate behaviors," such as aggression, hand-flapping, and non-functional vocal responses.
Barbin said the Surgeon General's Office also concluded ABA "is effective in increasing certain behaviors that are important," such as communication and social skills.
Delegates Robert Marshall (R-13), David Poisson (D-32), Thomas Rust (R-86), Charles Caputo (D-67), and Senator Mark Herring (D-33) attended the event, hosted by the Loudoun County Autism Network, and expressed their support for House Bill 83.
The bill, which was introduced by Marshall, after working with one of his constituents, originally sought to address the lack of insurance coverage for services for all children with developmental disabilities, but has since been amended to focus only on those children who have been diagnosed in the autism spectrum.
The bill was left in committee during last spring's session, but it has been regenerated with a public hearing anticipated in Richmond some time this fall.
"Every child is special. And we need to remember that providing these services is expensive, but it is an investment. And most importantly, it is an investment in children," Rust said Monday.
Children with autism who receive treatment early can eventually enter the work force, instead of becoming wards of the state, which would offset the costs of covering autism under insurance programs, he said.
Marshall spoke about how parents and advocates need to network to gather contacts from around the state who can petition local delegates and senators to support the bill, especially those on the State Corporation Commission's mandated benefits commission, and the commerce and labor committees in the House of Delegates and Senate.
Marshall was able to recruit four volunteers from the crowd to serve as phone organizers for northern, southern, western, and the tidewater regions of Virginia, and encouraged everyone present to give their information to Pat DiBari, a Lansdowne resident whose grassroots efforts spawned the Autism Summit and who founded The Loudoun Project, an online community and resource for parents of children with autism.
"Has everyone given their name and number and e-mail to Pat here?" Marshall asked during his speech. "If you haven't done it, you have to do it before you leave the room. You will not be allowed to leave to room until you do so," he said, drawing much laughter from the audience.
James Lafferty, president of the Autism Advocacy Coalition whose son was diagnosed with autism at the age of two and has undergone ABA treatments, spoke to the crowd about his own experiences with autism.
Lafferty told the audience about the anger he experienced when his son's teacher told him that his son did not need speech therapy, because he could not speak, and the pride he felt about being able to drop his son off for the his first day of regular kindergarten this fall.
He agreed with Marshall's ideas for organizing people at a local level to help influence legislators when it comes to autism matters, saying the audience would "have to be ready for the fight of our lives."
Wednesday, July 30, 2008
Micro-lending blog funds controversial autism treatments
Tori Tuncan didn’t know Logan Rogers or his mom, but she posted their request on her blog:
Logan, 10 years old, is unable to ride his bike because he has “absolutely no muscle tone.” He needs occupational therapy. Insurance will cover it, but his mom needs $250, immediately, to pay for the evaluation up front.
Can you lend his mom the money?
Within eight hours, Tori had raised the funds for Logan’s mom, thanks to five strangers who agreed to the loans. For Tori, it was on to the next kid.
A month ago, Tori quietly launched a very ambitious blog. At Lend4Health.blogspot.com, parents of autistic children who seek biomedical treatments — chelation, visits with DAN! doctors, hyperbaric oxygen treatments, and more — can ask for micro-loans from Tori’s readers.
Those biomedical treatments are used by thousands of parents who swear by them, but they’re often difficult to get insurers to pay for because they are not accepted by mainstream doctors as safe, effective treatments for autism. (For more on DAN! treatments, read our primer.)
The first loan took about a month to fulfill — $266 for food sensitivity testing. The second, Logan’s, took just eight hours. The third was posted Tuesday afternoon.
For a community of parents who are already comfortable getting treatment advice, sharing health problems and dishing on their kids’ diets online, this goes a step further: It gives them a chance to be actually invested in another family’s autistic journey.
Tori is a consultant in the Washington, D.C. area. She has a 3-year-old son with a sensory processing disorder (not on the autism spectrum), though she suspects he had autism. Because her son is on a gluten-free/ casein-free diet (a biomedical treatment for autism), she spends a lot of time on message boards with parents dealing with autism. (She also blogs about GF/CF diets, and — really — poop.)
“Everyone (on the message boards) is like, ‘We’re $30,000 in debt, we had to sell our house, our car, we’re living with my parents, insurance doesn’t cover any of this stuff,’” she said in an interview. “Most stuff you do with a DAN! doctor is not covered by insurance. Getting your olive leaf extract is not covered by insurance.”I haven’t read Jenny McCarthy’s next book, but I’m guessing a huge part of what she’s going to talk about is all the stuff moms have to go through to heal their kids. And it takes a major financial toll. But you do what you gotta do because it’s your kid.”
When she got the idea last month — inspired by Kiva.org, which facilitates micro-loans to developing countries — she ran downstairs to tell her husband. She vowed not to launch it until she lost 20 pounds — hoping the excitement of the idea would be the motivation she needed to lose the weight. But she couldn’t wait. She’s still working on the 20 pounds.
Loans are made and and repaid through PayPal, and borrowers sign a written loan agreement. The terms of the loan are set by the borrower. One of the moms is paying it off in a month; another, over the next year. I ask her if they pay interest. “Of course not,” she says.
She admits she rushed into the idea. She requires references, and she checks them out, but she doesn’t know what she’ll do if somebody defaults. “I have a FAQ section I haven’t done yet, and I know that’s one of the questions.”
But she doesn’t think that’ll happen. “I don’t think people will. It’s such a big deal. These moms are excited, like ‘Oh my gosh I can’t believe a bunch of strangers will lend me $10 to help my kid.”
I ask her if, when somebody asks for a loan, she takes their credit card number or something so she has some official leverage.
“No, but thank you. That’s a good idea.”
Logan, 10 years old, is unable to ride his bike because he has “absolutely no muscle tone.” He needs occupational therapy. Insurance will cover it, but his mom needs $250, immediately, to pay for the evaluation up front.
Can you lend his mom the money?
Within eight hours, Tori had raised the funds for Logan’s mom, thanks to five strangers who agreed to the loans. For Tori, it was on to the next kid.
A month ago, Tori quietly launched a very ambitious blog. At Lend4Health.blogspot.com, parents of autistic children who seek biomedical treatments — chelation, visits with DAN! doctors, hyperbaric oxygen treatments, and more — can ask for micro-loans from Tori’s readers.
Those biomedical treatments are used by thousands of parents who swear by them, but they’re often difficult to get insurers to pay for because they are not accepted by mainstream doctors as safe, effective treatments for autism. (For more on DAN! treatments, read our primer.)
The first loan took about a month to fulfill — $266 for food sensitivity testing. The second, Logan’s, took just eight hours. The third was posted Tuesday afternoon.
For a community of parents who are already comfortable getting treatment advice, sharing health problems and dishing on their kids’ diets online, this goes a step further: It gives them a chance to be actually invested in another family’s autistic journey.
Tori is a consultant in the Washington, D.C. area. She has a 3-year-old son with a sensory processing disorder (not on the autism spectrum), though she suspects he had autism. Because her son is on a gluten-free/ casein-free diet (a biomedical treatment for autism), she spends a lot of time on message boards with parents dealing with autism. (She also blogs about GF/CF diets, and — really — poop.)
“Everyone (on the message boards) is like, ‘We’re $30,000 in debt, we had to sell our house, our car, we’re living with my parents, insurance doesn’t cover any of this stuff,’” she said in an interview. “Most stuff you do with a DAN! doctor is not covered by insurance. Getting your olive leaf extract is not covered by insurance.”I haven’t read Jenny McCarthy’s next book, but I’m guessing a huge part of what she’s going to talk about is all the stuff moms have to go through to heal their kids. And it takes a major financial toll. But you do what you gotta do because it’s your kid.”
When she got the idea last month — inspired by Kiva.org, which facilitates micro-loans to developing countries — she ran downstairs to tell her husband. She vowed not to launch it until she lost 20 pounds — hoping the excitement of the idea would be the motivation she needed to lose the weight. But she couldn’t wait. She’s still working on the 20 pounds.
Loans are made and and repaid through PayPal, and borrowers sign a written loan agreement. The terms of the loan are set by the borrower. One of the moms is paying it off in a month; another, over the next year. I ask her if they pay interest. “Of course not,” she says.
She admits she rushed into the idea. She requires references, and she checks them out, but she doesn’t know what she’ll do if somebody defaults. “I have a FAQ section I haven’t done yet, and I know that’s one of the questions.”
But she doesn’t think that’ll happen. “I don’t think people will. It’s such a big deal. These moms are excited, like ‘Oh my gosh I can’t believe a bunch of strangers will lend me $10 to help my kid.”
I ask her if, when somebody asks for a loan, she takes their credit card number or something so she has some official leverage.
“No, but thank you. That’s a good idea.”
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