Desperate measures: The lure of an autism cure
June 29th, 2010
The Autism News | English
Green Our Vaccines protests over the perceived connection between heavy metals in vaccines and autism.
By Jim Giles | NewScientist
LEO MILIK is a success story. At age 2 he was diagnosed with autism. After his mother heard the condition could be linked to certain foods, she eliminated wheat and dairy products from his diet. Now six years later, Leo has only a mild form of the condition. He attends a mainstream school and doctors say that in a few years he could lose his diagnosis altogether.
There’s one wrinkle in this tale. The diet that appears to have turned Leo around has recently been tested in a randomised, placebo-controlled trial for the first time. The researchers reported last month that it provided no evidence the diet worked.
The diet is not the only unorthodox treatment around; a range of “biomedical” therapies that purport to treat the root causes of autism have gained popularity in recent years. These range from vitamins and antibiotics through to drugs supposed to remove heavy metals from the body, and even a hormone treatment that can delay puberty.
The autism “biomed” movement is well organised. An organisation called the Autism Research Institute, based in San Diego, California, lists the hundreds of doctors and therapists who provide these treatments. There are countless websites where parents swap advice; some members speak of trying out dozens of treatments, and spending many thousands of dollars over the years.
Some say biomed has helped their child, but others tell heart-rending tales of dashed hopes. None of these therapies has been shown to cure or even alleviate autism in good-quality trials. Some are very expensive, others are difficult and time-consuming. A few are even dangerous. This raises a question: why do so many parents of children with autism opt for unorthodox remedies, some of which are no better than snake oil?
Desperation is part of the answer. Autism is mysterious in origin, variable in manifestation, and lacks any known means of prevention or cure. And it has some unique characteristics that collectively tempt parents down the biomed route. The condition has also become the subject of several myths that encourage parents to throw science out of the window. “The evidence doesn’t come into it most of the time,” says Vanessa Green, a psychologist at Victoria University of Wellington in New Zealand.
Autism is a spectrum of conditions that cause problems with language, social interactions and imagination. Some infants seem to show autistic traits from a few months of age, while about a third develop more typically, but then regress some time between the ages of 1 and 3.
We still do not know what causes autism. The best guess is that most cases are the result of a genetic vulnerability acting in concert with factors in the womb, perhaps maternal infections. As treatment, all mainstream doctors can offer are speech and behavioural therapies. One common approach is a form of rote learning known as applied behavioural analysis, in which children are taught to perform simple actions for small rewards. A number of studies have shown that over several years, ABA improves speech and academic ability.
Out of options
Out of options
Maria Milik, Leo’s mother, thinks behavioural therapies did help her son, but for her and many other parents, they are not enough. Faced with a paucity of medical help, many families feel they have no choice but to experiment with biomed. Milik started Leo on the diet after a nutritionist said that her son might be allergic to wheat and dairy products. “I thought she was crazy but I had run out of options and was getting nowhere with the mainstream medical community.”
A lack of medical help is not the only factor driving the explosion of biomed. Another is the recent emergence of several myths about the condition. Perhaps the best known centre on the claim that vaccines can trigger autism. In the UK, concern revolves around the triple vaccine for measles, mumps and rubella (MMR). Adherents claim that three vaccines in one shot overloads the immune system. Vaccine fears have a different focus in the US, where some groups claim that the mercury in thimerosal, a preservative in some vaccines, is responsible.
Many large epidemiological studies have shown children who received MMR or thimerosal are no more likely to be autistic than those who didn’t. Yet as with any conspiracy theory, the more evidence that emerges to disprove the idea, the more the goalposts shift and the theories morph into broader, vaguer claims. Some parents now reject the entire childhood immunisation schedule, claiming it is “too much, too young”. In the US there is a prominent anti-vaccine movement that is suspicious of many of the additives in shots; their rallying cry is a call to “green our vaccines”.
Implicitly linked with the vaccine myth in some people’s minds is the belief that autism rates are skyrocketing, and that the cause must therefore be rising levels of some environmental toxin. When the US news programme Today asked readers for their views on autism in an online poll last month, for example, one response option was labelled: “So many more cases, so many more vaccinations – it can’t just be coincidence.”
It’s true that the number of diagnoses of autism has increased dramatically in many western countries. Before the 1980s, autism was thought to affect around 1 in 2000 children in the US; now almost 1 in 100 children has a diagnosis of an autistic spectrum disorder.
But is this increase real? Perhaps not, because the range of conditions labelled as autism has broadened over the last 20 years. Doctors have also become much more aware of the condition. Many children once diagnosed with learning difficulties, say, are now considered to be on the autistic spectrum. Researchers say these factors have caused much of the increase. Although it cannot be ruled out that there has also been a rise in the underlying rate, the picture is murkier than suggested by headlines about an autism “epidemic”.
Still, these myths have an intuitive appeal, especially for one group in particular: families of children who have the regressive form of autism. As regression often occurs around the time of childhood vaccination, parents blame the shots, says Paul Law, a paediatrician at the Kennedy Krieger Institute in Baltimore, Maryland. “It’s a very frightening experience to go through,” he says. “It’s an experience that demands an explanation.”
Yet cases of regressive autism have been documented for about as long as autism has been recognised as a clinical entity. Anyway, just because an illness arises in childhood as opposed to being present from birth does not mean the cause must be something in their environment. Law points out that there are other genetic conditions whose symptoms arise only later in life – sometimes even in adulthood, such as Huntington’s disease. “Most genetic disorders are characterised by a period of normal development and then loss of function,” says Law.
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Piglets to pave way for studying infant brain development
June 29th, 2010
The Autism News | English
By Sify News
Baby pigs could pave the way for researchers to study development of an infant’s brain, which in turn could help in predicting future behavioural problems such as cognitive deficits, anxiety disorders, depression, and even autism.
Researchers at the University of Illinois found that development of an infant’s brain can leave behind fingerprint, which can predict how behavioural problems arise.
They discovered that neonatal piglets are capable of being trained in traditional learning and memory tests.
Thus, the piglets can provide critical information that could directly benefit human health.
“Studies suggest that inadequate nutrition, stress, and infection leave fingerprints in early brain development that can make a person more vulnerable to behaviour disorders later in life. We are interested in learning how the brain develops during this time and how cognitive ability is affected.
Our goal is to understand how to promote optimum brain and cognitive development, and minimize potential experiential influences that might hinder the process,” said Dr. Rodney Johnson.
The use of the pig in neuroscience research is gaining popularity because pigs are anatomically similar to humans and many of their organ systems grow and develop similarly as well.
Pigs are also precocial, meaning they are born with well-developed sensory and motor systems, which allows them to be very mobile and weaned at an early age.
“Most important, the pig brain’s growth spurt occurs perinatally – a little before and a little after birth.
In contrast, the rodent’s brain growth spurt occurs after birth and the non-human primate’s occurs before birth, making them less ideal to study and compare to humans,” said Johnson.
The brain’s rapid growth spurt is a critical period of time, said Johnson.
“We know that if something goes wrong during this developmental period, the brain can be permanently altered. We believe that events occurring during this developmental period may underlie some of the behavioural problems that emerge later in life,” he said.
“When the immune system encounters an infectious agent, it responds and conveys information to the brain. We were able to show that when the peripheral immune system conveyed information to the brain in the neonate, their cognitive abilities were hindered. That reveals another advantage of the neonatal piglet model,” he said.
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Doctor to reunite with family
June 29th, 2010
The Autism News | English
Dr Edwin Lapidario with his wife Cherryl and sons Savion Nash and Sean Craig.
By Chantelle Kroehn | Southern Times Messenger
AN OVERSEAS doctor working at the Hackham Medical Centre is overjoyed at finally being able to bring his family to Australia after the Immigration Department granted his autistic son a visa.
Dr Edwin Lapidario has been reunited with his wife Cherryl and sons Sean Craig, 5, and Savion Nash, 3, who had been forced to remain in the Philippines while he battled to get a visa for Sean.
The department had refused Sean a visa because his autism was considered a “high cost medical condition” but changed its mind when an application for a shorter stay was lodged and the Hackham Medical Centre agreed to sponsor him. “My prayers were heard,” Dr Lapidario said, as he gave his sons a lollypop each from the jar on his desk. “I’d been battling for two years so I was losing hope and thinking I would have to go back to the Philippines if my family couldn’t be here with me.”
The aifSouthern Times Messenger aif was at the Hackham Medical Centre on Thursday, June 17, when Dr Lapidario introduced his wife and sons to staff members.
Many had tears in their eyes as they hugged the new arrivals.
“It is just so good to see the smiles on all their faces,” the centre’s manager Pam Thorpe said.
“It would have been such a huge loss if he had had to leave the centre.”
Dr Lapidario’s plight to bring his family to Australia struck a chord with the community after it was revealed in the aifSouthern Times Messenger aif in March.
More than 400 people signed a petition started by one of the centre’s patients Rob Pattison in support of Sean being granted a visa.
Dr Lapidario said he had been overwhelmed by the response from the community and thanked Mr Pattison, Ms Thorpe and the aifSouthern Times Messenger aif for their support. “I thought I was the only one battling for my son but knowing the rest of the community was concerned about me and my son is really good,” he said.
“Since I’m back, I’ve had to extend my consultations with my patients because they ask me lots of questions about my family and say they are happy for me and were praying for me.”
He was hopeful his son’s autism would improve now that the family is together and was looking forward to showing them around Adelaide, with a trip to the zoo one of his top priorities.
Looking at the photo of his family taken by a Messenger photographer, Savion’s eyes lit up.
“Mummy, daddy, Sean, me,” he said, pointing out each member with a big grin. He said it all.
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Parents Protest Change in Special Ed Services
June 29th, 2010
The Autism News | English
By Mike Pignataro | TheCadwellsPatch
After a more than hour-long, passionate protest by a large group of parents of special education students Monday night, the Caldwell-West Caldwell Board of Education postponed a vote until the end of the summer to switch the district’s physical and occupational therapy vendors.
The board listened as numerous parents and even one child with autism questioned the qualifications of the proposed providers, and more specifically, the transition the special education students will face with new therapists.
As a result, the board voted 4-to-1, with John King opposed, to table the resolutions to award professional services contracts to Forked River-based Advance Education Advisement Corp., for occupational therapy services, and Roosevelt-based Therapeutic Outreach for Children, Inc., for physical therapy services.
After nearly two months of research and analysis, Nicholas Del’Re, interim director of special education, recommended the agencies to the board over Caldwell Pediatric Therapy Center, which has served the district for nearly 20 years.
But Superintendent Daniel Gerardi said Tuesday the contract with Caldwell Pediatrics that expires Wednesday will be temporarily extended through the district’s special education summer program until the board’s next public meeting on Aug. 30.
“The parents all raised good questions, but I did not have the answers readily available last night,” Gerardi said. “It was a wise decision by the board to table voting on these issues until we can better communicate with the parents.”
According to Gerardi, parents will receive a letter in the mail this week with updated information on the summer program. In addition, more information on the new proposed vendors will be provided at the August Board of Education meeting, Gerardi said.
Paul Palozzola, who will take over as supervisor of the special education department on Thursday, will evaluate the recommendations of Del’Re, who will oversee the summer program before returning to retirement.
Gerardi admitted it’s possible Palozzola could disagree with the proposals, but pointed out that Del’Re conducted a thorough evaluation of the approximately 14 proposals that were submitted.
“Mr. Palozzola will take a look at the proposals and if there’s any differing in opinion, he’ll communicate that to the board,” Gerardi said. “But again, Mr. Del’Re has done a very thorough job, but perhaps Mr. Palozzola will see it differently.”
According to Gerardi, the state mandated last year that each school district request proposals each year for professional services.
While Caldwell Pediatrics was awarded the contract last year to provide both physical and occupational therapy, a switch to Advance Education Advisement Corp., and Therapeutic Outreach for Children Inc., would save the district approximately $35,000, Gerardi said.
“We are now required by the state to go out each year and solicit proposals for all of these services. The state’s rationale and motivation for doing that is certainly more financial than anything else, looking for ways of reducing costs if the same type of service can be provided. Mr. Del’Re certainly did not take this task lightly. He’s been working on this probably for the better part of the last two months,” Gerardi told the group of upset parents Monday night.
“These are not in all cases the lowest proposal that we received, but are the result of Mr. Del’Re doing an analysis and weighing the cost against the quality of service by checking references, checking with other districts who have contracted these particular individuals. It was not an arbitrary decision. It was something that was not done quickly or arbitrarily or just for the sake of getting it done or just for the sake of saving money. Mr. Del’Re I think cares too much about the program and about the district to do anything that he thinks would harm or hurt the children.”
While pointing out the district’s reduction of 29 special education aides for next year, parents questioned why they or the district’s special education teachers weren’t consulted during Del’Re’s evaluation of the proposals.
Parents were further angered by the lack of notice, considering the summer program will begin this week, and by Del’Re’s absence from the public meeting to answer their questions.
“We don’t generally have directors of particular departments present for these specific issues,” Gerardi said Tuesday. “It was unexpected that we received such a response to the program. There were a lot of good questions that the parents asked and there’s a legitimate concern any time a change is occurring.”
However, even the smallest change, parents said, will have a significant impact on children with special needs.
“You can stand up there and look at numbers and crunch them and say it’s black and white, it’s a matter of $35,000, nothing is changing in the services—as a parent of a child with special needs, the very fact that the therapist is changing, is change. That’s going to set them back,” said Tara Hapward, a West Caldwell mother of a daughter who graduated from the district’s preschool disability program.
“Were the teachers consulted on the proposals? Were any of the special ed teachers consulted? Were any parents consulted on this decision? If these are the people in this room that you’re serving, I’d like to know why none of us were consulted prior to this.”
Gerardi told parents De’Re has assured that the new agencies will provide the same level of service at simply a cheaper rate.
However, Jason Campbell, a therapist with Caldwell Pediatrics, questioned that level of service.
“Looking at the New Jersey Administrative Code, Chapter 14, sub-chapter five, school districts are directed to use providers that are listed on the state-approved list of agencies,” Campbell said. “In looking at this information, I’m finding that these agencies do not have the appropriate therapists listed on the state Web site, which was updated this morning.”
According to Campbell, Advance Education Advisement has no occupational therapists listed on the state Web site, while Therapeutic Outreach for Children has no physical therapists listed.
“I’m concerned about the qualifications and the ability of these individuals to provide quality care that families and residents of this district have become accustomed to and deserve and required to receive through their IEPs,” Campbell said.
In addition, West Caldwell parent Ray Castellano pointed out that Advance Education Advisement has numerous job postings for therapists who are “needed immediately” in Essex County.
Therapeutic Outreach for Children is also understaffed and would have needed to conduct physical therapy sessions in the children’s homes this summer as a result, if the recommendation had been passed Monday night.
“If my child is going to be treated at home with the equipment I have in my house, he will most certainly regress,” said Maryann Shulman, a West Caldwell parent of a 15-year-old son with special needs.
“You think you’re saving money? We’re all going to be coming to you, asking for more services because our children aren’t going to continue making the progress. With all due respect to you, and I know you’re trying to serve us well, we are experts of our children and no one else is.”
After 19 years of providing physical therapy and 13 years of occupational therapy to the district, Caldwell Pediatric Therapy Center Owner Judy D’Annunzio was upset when she was informed of the recommendation on Friday and read a letter she prepared for the board during the meeting.
“I would be remiss if I didn’t speak on behalf of my staff. They are well-trained, highly professional therapists who have provided quality service for many years. My therapists are committed to providing beyond appropriate services to our students. Several of my therapists live in the district and take pride in the fact that they are serving their neighbors, understanding the responsibility that brings,” D’Annunzio, a West Caldwell resident, read.
“My counselors give countless hours of unbilled time to the district because it’s the right thing to do. You can imagine my sadness when on the last day of the regular-school schedule, we were informed that our services will no longer be required. It is confusing and upsetting on many levels.”
Caldwell Pediatrics, located near the end of Bloomfield Avenue in West Caldwell, also provided convenience for parents, who were concerned over the distance to the new agencies’ locations in Ocean and Mercer counties.
While Gerardi pointed out that Advance Education Advisement has a satellite office in West Orange, some parents wondered if special education students who attend school out of district will be provided transportation to that office.
Others simply felt more communication was necessary.
“I can speak for 15 different sets of parents who I have spoken to. We feel like we’re in the dark right now and I just don’t know why,” West Caldwell parent Anthony Bonanno said. “I’m very, very concerned that this is being done too quickly.”
However, the district now plans to provide parents with a more informative presentation in August before voting on the proposals.
“We’re going to get more information on the proposals for the August meeting to answer the questions parents raised,” Board President Mary Davidson said Tuesday. “We were concerned—we just couldn’t vote in good conscience.”
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Bridging the gap in health care coverage for children
June 29th, 2010
The Autism News | English
By Charlene Muhammad | The Final Call
LOS ANGELES – Parents who have lost their jobs, are struggling to find work, or planning for new mouths to feed are also fighting to get health insurance for their children.
Advocates in California say help is there, but too few people know about it.
Part of the help they are referring to is Healthy Families, California’s State Health Insurance Program, which provides low cost medical, dental, and vision health coverage to children whose families earn too much money to qualify for free health insurance.
According to Kidsdata.org, which promotes the health and well being of children in California by tracking different health indicators, Black children are about 13,000 of the 900,000 enrollees in the Healthy Families program, compared to Latinos at 51 percent with Whites and Asians at just under 10 percent.
“Once you face barriers dealing with low income and already marginalized populations who are taking care of families and dealing with the hurdles of trying to put food on the table, health care just gets pushed aside,” said Annie Park, a policy director at Community Health Councils, Inc., a non-profit health advocacy group.
The biggest hurdle for the program was to avoid cuts and denying health insurance access due to California’s $19 billion budget deficit, but with President Barack Obama’s extension of the State Health Insurance Program, Healthy Families will run through 2013 and beyond, according to advocates.
The hurdles to health insurance for many families include long waiting lists and complex application requirements, which vary from county to county. “Imagine somebody that has to take off of work to fill out an application, they only have a limited amount of time.They may have to be on the bus system, and in Los Angeles and many major cities, the bus system is horrible, so it’s not a simple process to get through,” said Sonia Vasquez, a policy director for the Community Health Councils.
Although Healthy Families and Medi-Cal, the state’s free insurance program, have tried to provide applications in different languages, potential enrollees are dealing with workers who do not speak their language creating anxiety that prolongs the process.
“But that should not be a barrier to getting children insured,” said Kelly Hardy, health policy director for Children Now, a national child advocacy organization.“Health insurance is important because uninsured children admitted to the emergency room are 60 percent more likely to die than insured children … insured children are more attentive in school and preventive care is cost effective.”
To overcome the language barrier and bridge the divide between needy families and public health insurance, Healthy Families utilizes Certified Applicant Assistants to help enroll families in the program.
In part, to qualify, children must be 18 and under; without employer-sponsored health insurance in the last three months of their application; and cannot be eligible for or enrolled in Medi-Cal.
Applications are available at www.healthyfamilies.ca.gov and families can find out in 10 days or less whether their children are eligible.
The program’s Health-e-App Public Access allows families to enroll online (www.healthyfamilies.ca.gov). For information on public health insurance across the U.S., families can visit https://www.cms.gov/home/chip.asp.
Once enrolled in the Healthy Families programs, a monthly premium between $4 and $24 for each child is paid, but no more than $72 for each family. The co-payment is $5 to $15 for visits and some services.
To qualify, a family’s income can be up to 250 percent of federal poverty guidelines. The guideline for a family of four is $22,050 and for a family of six, $29,530, according to the Department of Health and Human Services 2009 Poverty Guidelines.
Nearly one million children in California are uninsured, but 600,000 are eligible for Healthy Families or Medi-Cal, according to the California Endowment, a private health foundation. It works to get children insured by connecting families and health insurance programs through day care centers.
Fabiola Magdaleno doesn’t mind speaking out to help raise awareness about help that exists.She and her children were covered through a health plan at her husband’s job, but her daughter contracted a disease and had a seizure two months before he was laid off from work and lost his insurance.
Insurers called the child’s disease a pre-existing condition.The family could not afford extended coverage offered by their former plan and MediCal denied their request for emergency coverage, she said. Advocates helped enroll her children in Healthy Families.
“At the end of the day, when you can’t provide your kids with health care and their other needs, you feel you’ve failed as a parent,” Ms. Magdaleno said.“We are your regular American family who worked hard, paid our bills, and tried to provide for our family, but when you run into trouble and don’t qualify for anything, what do you do?I feel that we’ve done everything right … We’re not insured right now, but at least our kids are.”
The program also helped Marie Antoinette, a Black, married mother of three. Mrs. Antoinette’s children were covered through her husband’s job plan, until the job was lost. “Without Healthy Families insurance, none of my three children would have been able to see a doctor on a regular basis nor have vision coverage. We were told in order to keep insurance on just my husband and myself, the monthly premium would have been $800 with minimal coverage,” Mrs. Antoinette said.
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Ruling on autistic boy’s education challenged
June 29th, 2010
The Autism News | English
Cian and Yvonna Ó Cuanacháin at the Supreme Court yesterday. On hearing that the State was funding ABA for their son Seán, the court asked if the appeal’s central issue was therefore moot.
By The Irish Times
THE SUPREME Court has begun hearing an appeal by a young autistic boy against the High Court’s refusal to compel the State to provide funding into the future for a specific form of education for him.
In what was regarded as a test case for autistic children seeking education according to the system of Applied Behavioural Analysis (ABA), Seán Ó Cuanacháin (10), suing through his father Cian, of Woodbine Avenue, Mountain View, Arklow, Co Wicklow, had sought orders compelling the State to provide funding for education according to ABA.
The case ran for almost 70 days in the High Court, incurring costs estimated at about €5 million.
In his judgment in 2007, Mr Justice Michael Peart ruled the programme of education being provided by the State for Seán – an eclectic and Model A programme – was “appropriate autism-specific educational provision” and, in those circumstances, declined to make orders requiring the State to fund an ABA programme.
The court heard yesterday Seán was now receiving education according to the ABA method and the State was providing funding for that.
His parents contend the State is required to provide such funding into the future.
Paul Sreenan SC, for the child, said the appeal relates to the past failure by the defendants to discharge various duties to Seán, such as speech and language therapies, and for the future provision of ABA education and appropriate therapies for the boy.
The Supreme Court – comprising Chief Justice John Murray, Mrs Justice Susan Denham, Mr Justice Adrian Hardiman, Mr Justice Nial Fennelly and Mrs Justice Fidelma Macken – on hearing that the State was funding ABA for Seán, asked if the central issue in the appeal was therefore moot. The court has invited both sides to make submissions on that matter when the case resumes today.
Mr Sreenan said the State had initially refused to provide funding for ABA for Seán and instead proposed to provide for his continued education on the basis of an eclectic model.
Seán is now receiving State funding for ABA and his parents’ “clear preference” was for him to continue to be educated through the ABA method, counsel said.
Counsel argued the High Court had erred in holding the eclectic method was appropriate for Seán and also erred in failing to consider the failure by the State to provide Seán with ABA breached provisions of the European Convention on Human Rights.
While the High Court had awarded damages to Seán against the Health Service Executive (HSE), damages also ought to have been awarded against the State over its failure in its constitutional and statutory duties towards Seán, Mr Sreenan also argued.
Mr Justice Peart had awarded Seán almost €61,000 damages against the HSE because of “unreasonable” delay in diagnosing his condition and in providing appropriate therapies to him. The HSE has cross-appealed that ruling to the Supreme Court.
The State was liable for the failure to provide an education appropriate to Seán’s needs following his diagnosis, counsel said. That failure occurred during the 27 months between December 2002, when Seán was diagnosed, to February 2005 when his full-time placement was sanctioned.
Mr Sreenan also argued the High Court had ignored the issue of the parents’ choice for their son to be educated through the ABA method, he said.
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