Autism Research Institute
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Schafer Autism Report
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Monday, October 26, 2020 Reader Supported
In This Issue:
Epilepsy: A Fight For The Cure
Katie Couric Reports On The Movement To Raise Awareness And Research Funds For This Disease
(CBS) Susan and David Axelrod's oldest daughter Lauren had tried 23 different medications and an unsuccessful brain surgery to control her epilepsy by the time she was 18.
When doctors could not stop her dangerous and devastating seizures, the Axelrods realized that they would have to do something themselves to help Lauren. Today, they are fighting for a cure for epilepsy by raising awareness and funding for innovative research.
Susan and David, President Obama's senior advisor, appeared in a Katie Couric 60 Minutes report on epilepsy, broadcast Sunday.
"Why can't they stop a seizure? I mean, this is a disease that's been known since Biblical times. The research, and the ability to treat and control is so primitive," says Susan. David describes what it is like to live with the constant threat of seizures. "Epilepsy is like terrorism of the brain. You don't know when it's going to strike, where you're going to be," he tells Couric.
Epilepsy affects nearly three million Americans, more than cerebral palsy, Parkinson's and multiple sclerosis combined. What's more, the disease strikes and kills about as many in the U.S. each year as breast cancer, but gets five times less federal funding for research than breast cancer receives.
In addition, there is a new population at increased risk of developing epilepsy: veterans of the wars in Iraq and Afghanistan who have suffered serious traumatic brain injury.
Eleven years ago, Susan Axelrod helped found CURE, a non-profit organization dedicated to raising awareness for epilepsy and generating funds for research into new treatments and a greater understanding that could one day lead to a cure. One of the scientists whose work is partly funded by CURE is Dr. Frances Jensen at Children’s Hospital in Boston.
Asked by Couric if she is maddened by the lack of attention paid to epilepsy, Jensen replies "Yes. People don't realize that it's happening to two in 100 people, and even more than that, in five or six out of every 100 children."
There is some progress being made. A new device implanted in patients' brains has reduced seizures in some patients in an ongoing clinical trial.
And Lauren Axelrod, now 28, finally found a drug that made a difference for her, controlling her seizures and improving her life. "There was a time when we have given our right arm for just a week of good days," says David. "And now, she has them consistently. So, you know, that's a big victory."
• • •
Number of Children Awaiting Autism
Ontario’s NDP Leader Andrea Horwath is citing more troubling facts concerning the McGuinty government’s approach to treating Ontario children with autism.
“The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish,” Horwath said in the Ontario Legislature today after revealing the government’s latest quarterly numbers for April to June, 2009.
Compared to the previous quarter, 1,649 children are now waiting for IBI therapy. That’s 136 more than previously reported (1, 513) and a 9 per cent increase in just three months.
“When will parents see adequate service levels and proper funding for children’s autism treatment?” Horwath demanded of Minister of Children and Youth Services Laurel Broten. “It has been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file."
The government is cutting off more children from IBI even though schools are not able to provide the therapy, Horwath said. The latest quarterly statistics from the ministry show another 114 children were abruptly cut off.
“The regular quarterly numbers don’t lie. Why are more children with autism waiting for treatment, and why are more children having their autism suddenly cut off and terminated?” Horwath said. “The McGuinty government’s autism program is not living up to the Premier’s promise of ensuring children with autism receive treatment regardless of their age."
Horwath, the MPP for Hamilton Centre, recently brought the autism file into her portfolio as Ontario’s NDP Critic for Children and Youth Service.
• • •
I Don't Believe My Wife Could Murder Our Autistic Son, Brampton Father Says
By Ryan Cripps, Global News is.gd/4D1Ez
A 51-year-old Brampton woman appeared in court this morning, charged with the murder of her 15-year-old autistic son.
Police were called yesterday morning to a hotel in Mississauga, where they found the body of Tony Khor, 15, with "obvious signs of trauma," according to Peel Regional Police.
The boy's mother, Seow Cheng Sim, 51, was arrested at the hotel and is charged with first-degree murder.
The boy's father, Boon Khor, told Global News he had a fight with his wife on Friday night at the family's home and she left with their son on Saturday. He said they fought often, but would always return home after a cooling-off period.
He says the couple have been married for more than 20 years and doesn't believe she could have murdered her son.
Tony Khor was a low-functioning autistic who attended a special program at St. Marcellinus School in Mississauga. Students at the school told Global News on Monday that they were told a classmate died in an accident over the weekend. The school's flag was also at half staff.
Boon Khor says his son loved video games and puzzles, but like many autistic children, did not talk very much.
Seow Cheng Sim will be back in court on Friday.
• • •
South Carolina Student Mortally Wounded
Trevor Varinecz, 16, who was described by friends as a compassionate, caring and happy student, was shot and killed after confronting Horry County Lance Cpl. Marcus Rhodes, the resource officer, with two knives Oct. 14.
The motive for the Carolina Forest incident hasn’t been released by agents with the State Law Enforcement Division, who are continuing their investigation.
Varinecz reportedly had Asperger’s syndrome, which is a developmental disorder that resembles autism. He was shot five times, once fatally to the chest, after stabbing Rhodes, who was justified in his actions, according to 15th Circuit Deputy Solicitor Fran Humphries.
The NAACP raised questions about the use of force.
“There are serious questions that must be aggressively investigated,” the NAACP said in a statement. “Was the officer trained in the techniques to work with individuals with autism, or mental illness? Did the officer use all available means to contain the situation without using deadly force? Should school resource officers be allowed to carry guns in schools?"
Those are legitimate questions. And it’s also legitimate for parents across the Pee Dee to be asking if school districts are reviewing their safety procedures in wake of the incident. They should be.
+ Read more: is.gd/4D75Y
• • •
Judge Orders Retrial in Travolta Case
Lawmaker's remark causes judge to order new trial
Nassau, Bahamas (AP) - The trial of two people accused of trying to extort John Travolta following the death of his son in the Bahamas has ended in a mistrial after a lawmaker suggested the still-deliberating jury had acquitted one of the defendants.
Senior Justice Anita Allen said she was reluctantly ordering a new trial "in the interest of justice" because the politician's statement, in a speech broadcast on television and radio, gave the appearance of an improper leak from the jury room.
+ Read more: is.gd/4DtOS
• • •
Call for Abstracts and Panels International Meeting for Autism Research
The IMFAR Scientific Program Committee invites abstract and scientific panel submissions for review in all disciplines relevant to autism research for presentation at the 2010 IMFAR meeting in Philadelphia, May 20-22. The deadline for abstract submission is November 20, 2009. Abstracts should be submitted online at imfar.confex.com/imfar/2010/cfp.cgi.
Relevant topics include but are not limited to: etiology, risk factors, epidemiology, neuroimaging, treatment, cognition, behavior, language, communication, diagnosis, phenotype, genetics, animal models, education, neurology, psychiatry, psychology, neuropathology, immunology, environment, and medical conditions. IMFAR is a scientific meeting and only presentations based on empirical data will be accepted.
Individual abstracts should report on the results of a single study. The program committee will select abstracts for either an oral presentation or a poster presentation.
+ Read more: www.sarnet.org/doc/insar.htm
• • •
Chinese Massage Therapy Helps Sensory And Self-Regulation Problems In Children With Autism
A recent study published in the American Journal of Occupational Therapy* by a research group from Western Oregon University reports on a randomized controlled study evaluating the effect of a five-month intervention directed towards improving measures of sensory impairment, digestion and sleep in 46 children with autism under six years of age.
The intervention, Qigong Sensory Training (QST) is a massage intervention based in Chinese Medicine and involves daily massage of children by parents, with trained staff support. Improvement was evaluated in two settings: the pre-school and home, by teachers (blind to group) and parents. Teacher evaluations showed that children receiving the QST intervention had significant classroom improvement of sensory impairment (p<.01), social/language skills (p<.01), and reduction in autistic behavior (p<.01)compared to wait-list controls.
Parent data confirmed the findings in the teacher data, indicating that the gains had generalized across contexts.
The study is the fourth published in a research stream exploring the role that sensory impairment plays in the development of autism.
According to Chinese Medicine, sensory impairment underlies both the abnormal behaviors and the delays in learning seen in autism, and is due to several factors, including toxicity. The massage is directed towards recovering normal sensory function, and strengthens the child’s ability to remove toxins and recover from toxic exposures. The intervention is promising in that it is non-invasive, utilizes the resources most available to young children with autism - the parents and early intervention program staff - and results in significant reductions in parent stress relative to caring for young children with autism.
+ Read study here: www.sarnet.org/doc/AJOT2009.pdf
*Silva, L., Schalock, M., Ayres, R., Bunse, C., & Budden, S. (2009). Qigong massage treatment for sensory and self-regulation problems in young children with autism: A randomized controlled trial. /American Journal of Occupational Therapy, 63, /423-432/.
• • •
Controversial Autism Conference
Got Funds From 'Sick Kids'
By Tom Blackwell, National Post. is.gd/4DqEE
A branch of Toronto's renowned Hospital for Sick Children is being criticized for funding an autism conference whose organizers champion the discredited belief that childhood immunization causes the neurological disorder.
The event - to start on Saturday at the University of Toronto medical sciences building - also includes presentations that some experts are calling unproven science, promoting such alternative treatments for autism as homeopathy and hyperbaric oxygen chambers.
Organized by the American group AutismOne and Austism Canada, the meeting has received $5,000 in funding from SickKids Foundation, the hospital's fundraising wing.
Blogs designed to expose practitioners of dubious science have railed against the event for the past two months, questioning why a respected health-care institution would offer its support to a group that considers vaccination of children a health risk.
"The name of Sick Kids is worth more to them than the money: it is a stamp of legitimacy," Scott Gavura, a Toronto pharmacist who runs the Skeptic North blog, said in an interview on Monday.
"Sick Kids hospital has some of the world's most renowned autism researchers. I suspect most of them would not be thrilled by the fact that SickKids Foundation is supporting this conference."
Carole Duncan, a spokeswoman for the foundation, said the grant was awarded in May after Autism Canada submitted a detailed application.
"From our perspective, Autism Canada is a reputable organization doing excellent advocacy work in Canada," said Ms. Duncan in an emailed response.
"Based on our experience in working with Autism Canada, their grant application and their reputation, we have no reason to believe the grant is being used for anything other than providing a respectful forum for parents, therapists, doctors, researchers and individuals with autism spectrum disorder."
In an email sent to Mr. Gavura and others who asked about the grant decision, the Foundation also indicated that it takes a "neutral stance" on alternative and complementary health care for children, and has a history of funding it.
The event's organizers were not available for comment yesterday.
AutismOne, one of the co-hosts, is a U.S. group whose website states prominently that "autism is caused by too many vaccines given too soon." The vaccine-autism connection was first promoted in a small 1998 study, but several "large and well-conducted" studies have since unearthed no evidence to support the notion, said Dr. Susan Bryson, a clinical psychologist and autism expert at Dalhousie University.
+ Read more: is.gd/4DqEE
+ Conference information here:
AutismOne & Autism Canada Conference 2009
Changing The Course Of Autism In Canada
Keynote Address Martha Herbert, MD, PhD
Autism One and Autism Canada are proud to present the inaugural AutismOne / Autism Canada Conference.
The 2-day main conference will be held Saturday, October 31 and Sunday, November 1, preceded by a 1-day training program for practitioners, on Friday, October 30.
Featuring over 20 of the most highly respected names in the autism community the conference provides the most up to date information to help your child. From implementing the best biomedical treatments to realizing the benefits of educational therapies to adolescence and adulthood issues the conference brings you the answers to be your child’s most effective healer and powerful advocate.
+ Read more: old.autismone.org/?goto=canada
• • •
A Brief History of FEAT and
Autism Services in Sacramento
By Michael McIntire firstname.lastname@example.org
Families for Early Autism Treatment started almost 15 years ago with a bunch of autism parents in a living room, trying to figure out how to get ABA consulting and services. At the time there were no local Applied Behavioral Analysis providers, and also then - the Lovaas Institute had so few people, they were rationed - and flown around the country.
FEAT organized two things then - a training program for several local people to spend a summer at UCLA / LIFE in LA, to return to Sacramento to provide services. Several of those people still provide services here in Sacramento. The second part was getting a grant to fund workshop programs, and then to get continuing funding from Alta California Regional Center. This model is still known today as the "workshop" model.
In the workshop model, parents hired their own tutors, took a weekend of training from a LIFE consultant, and took supervision from one of the trained lead tutors. There was a waiting list of 6 to 12 months for that workshop, and then you saw the LIFE consultant once a month there after. FEAT paid for the workshop weekend, ALTA covered the tutors and consulting there after, parents were responsible for materials, accounting, and a lot of time in the chair. The Parents were the vendors.
About five years into FEAT's existence, a perfect storm of talent came on the board, including Chuck Gardner, Rick Hayes, Kathleen Berry, Nancy Fellmeth, myself and a number of others - all with deep corporate and business experience (credit to Gordon Hall for assembling this group). FEAT became an incubator of projects overshadowing it's history as a support group. We started advising other Autism groups, Lenny Schafer started the FEATNews, I built one of the first large scale Autism Web sites, Rick, Chuck, Steve Koyasako and I submitted a grant request and won the funding for the Hope Project - which lead directly to the founding of the M.I.N.D. institute - all of the FEAT Board members contributed their support and influence to help move this project forward.
Also during that time, it became very obvious to everyone that the model we were using was neither practical nor scalable, not to mention quite cost inefficient. Our conclusion was that we had to create a market for professionals to want to come work here - to setup businesses which would service our children - at a much earlier age, at lower cost, and without waiting. We needed a Market Place for autism services. So we set out to do that - FEAT purposely tried to create stable funding streams, so a consistent set of money to fund the services would incent professionals to work in Sacramento. FEAT also started to pursue legislative remedy, to little avail, and began to support advocacy for parents in direct and indirect ways.
Some efforts did not pan out well, others with mixed results. But the end goal of having a pool of vendors in Sacramento to choose from was quite successful. The greater Sacramento area enjoys a very high number of vendors in comparison to anywhere else in the country, much less the international realm. Where FEAT was not so successful, was getting quality from most of those vendors. The conflicting set of priorities and requirements between ALTA, the School Districts, the legislative efforts, combined with FEAT missing the need to define the standards up front - lead to a lack of accountability that exists today.
One unexpected result was the decline of workshop programs, because of the increase in vendor count and external process. FEAT also did not expect the resulting decline of organizational and group knowledge about what makes good ABA work, how to hold agencies professionally accountable - and just plain interest. The implementation knowledge shifted away from FEAT and Parents to vendors and government agencies - and the overall quality of programs has declined in our community as a result. More importantly, as people took services directly from vendors and ALTA - FEAT lost it's stream of volunteers with new energy and ideas - because people were no longer referred to FEAT - and with it a part of the built in accountability for quality in our community.
There are good vendors out there - most of us here know who they are.
There are not so good vendors too. The problem with these kinds of statements is they are so subjective. What is acceptable to a school might not be to ALTA, what is acceptable to ALTA, might not be to parents - assuming parents had enough knowledge to make a reasonable judgment about the quality of services they are receiving.
Parents trained in those old "workshop" models were required to learn ABA, to practice, and implement it, and to fairly judge the outcomes and the personnel involved - because they implemented the curricula and ran the programs. So if you need help knowing what is good or not - look for those FEAT parents with children from 10 to 17 years of age - they have been through the boot camp and they know what works and what doesn't. And keep in mind - they're tired.
FEAT has a class for educating parents - done by parents who continue to do workshop ABA programs, even after 10 years. There is no better place to learn about the process of using ABA - these are the parents who know how. There are so few people left doing these programs, and there is so little interest from other parents, that we don't do it very often any more. If there is enough interest, we'll put them on again, but the people coming need to understand the commitment level these parents expect. Doing ABA right, and learning the wide and deep body of knowledge to be able to meaningfully contribute to an ABA program takes a great deal of commitment, not to mention the raw investment of time and energy.
We have a lot of great ABA talent in this town, and most people don't know how deliberately FEAT nurtured and created this marketplace. If you came from another place - you already know how bad it is everywhere else. That said - it could be a lot better by adding accountability for quality to both vendors and schools.
• • •
'Shot In The Arm' For Special Ed in New Jersey
By Andrea Alexander, The Record. is.gd/4DuuR
Special-education staff and parents are using terms like "historic moment" and "wonderful thing" to describe how federal stimulus funds are spurring North Jersey districts to transform programs for disabled children.
Some districts have embarked on major overhauls: Wayne plans to reorder and consolidate early childhood programs, in hopes of becoming a state-of-the-art magnet of such services.
Others are solving specific problems: Lyndhurst has brought 20 special-education high schoolers, previously sent out of district, home by providing classrooms and staff tailored to their needs.
And still others — prominently Paterson — are working to integrate special ed programs so disabled children are provided ample opportunity to mix with "regular ed" students.
In all, over the next two school years, New Jersey will receive $371 million in federal stimulus earmarked to enhance such special education and preschool programs for the disabled.
The Paterson schools are receiving $7.5 million — by far the largest allocation in North Jersey — for its 2,800 special-education students in a district of about 26,000 children.
"This has been a shot in the arm to go ahead and get some things for our students that we would ordinarily hold off on, so I think it's very significant," said Donald Merachnik, an interim assistant superintendent in Paterson.
"It's historic," Beth Marmolejos, president of Wayne's Special Parents Association, said of her district's plans, "because we are headed on the right path toward helping these children become members of the community; to be able to provide them with the tools, the support and the opportunity to achieve the American dream."
Wayne intends to consolidate eight preschool classes for disabled students — now spread among six buildings — under one roof. School officials also anticipate some students who attend outside programs the district pays for will be able to return to local schools. Additionally, the plan is expected to generate revenue to cover future costs by attracting receiving arrangements with other districts.
Lyndhurst used about $400,000 to build two classrooms for 20 disabled high schoolers who had attended tuition-based programs out of district. With its own program, Lyndhurst expects to save about $800,000 in tuition and transportation costs. Three teachers work in each class of 10 students.
"There is more individualized attention, and there is an ability to track these kids so they don't get lost," said district Superintendent Joseph Abate Jr.
+ Read more: is.gd/4DuuR
• • •
Straight from the Horse's, that is
The insert for the H1N1 (swine flu) 2009 vaccine is now posted on the FDA web site, and can be viewed here.
The following statement and other incredulous statements appear on the first page of the insert:
"Safety and effectiveness of Influenza A (H1N1) 2009 Monovalent Vaccine have NOT been established in pregnant women, nursing mothers or in persons less than 18 years of age."
In addition, the multi-dose vial, which is so much more commonly used than the single-dose vial, contains thimerosal (which contains mercury) at 25 mcg per dose, the same amount as in the multi-dose vial of the seasonal flu vaccine.
This information contradicts what we are constantly being told by the media and, very often, our doctors. The insert referenced above is for the H1N1 vaccine manufactured by CSL and the insert for the same vaccine manufactured by Novartis contains the same information.
- Amy C.
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Lenny Schafer email@example.com The Schafer Autism Report is a non-profit corporation
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