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Thursday, June 30, 2011

Vaccines, Autism, and the Amish

The various vaccine manufactroversies that have spread in the wake of the Andrew Wakefield’s bogus claims that the measles component of the MMR vaccine might be linked to autism are too numerous to unpack in one brief blog post. One of the most persistent has been the Amish fallacy: Most Amish don’t vaccinate; there’s almost no record of autism in Amish communities; ergo, vaccines cause autism. (This argument has also been used, time and time and time again, to illustrate the efficacy of a proposed vaccinated-versus-unvaccinated study.)

Not surprisingly, no part of the Amish fallacy — which has been kicking around for over a decade and gained new prominence and attention with this, purely anecdotal 2005 dispatch* — is true. Over the years, Ken Reibel at Autism News Beat has documented the problems with the Amish report, although the myth still persists.

Yesterday, Reuters Health reported on a recent study in Pediatrics titled “Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care.” The study found that majority of Amish parents do, in fact, vaccinate their children…and among the minority that don’t, the most common reasons cited were the same anti-vaccine fueled fears that have infected people around the country.

The abstract:
Objective: Holmes County, Ohio, one of the largest Amish communities in the world, has persistently low immunization rates. Studies of other Amish communities have revealed that parents do not immunize their children because of lack of access to immunizations. Our study explored reasons that Amish parents in the previously uninvestigated Holmes County population exempt themselves from immunizations.

Methods: In January 2007, questionnaires for assessing attitudes regarding immunizations were mailed to a random sampling of 1000 Amish parents in Holmes County.

Results: Thirty-seven percent of the parents responded. Among the 359 respondents, 68% stated that all of their children had received at least 1 immunization, and 17% reported that some of their children had received at least 1 immunization. Only 14% of the parents reported that none of their children had received immunizations. Eighty-six percent of the parents who completely exempted their children from vaccines stated that the main reason they do not vaccinate their children is concern over adverse effects. Many parents indicated that they allow their children to receive only some vaccines because of concern about the way certain vaccines are produced.

Conclusions: The reasons that Amish parents resist immunizations mirror reasons that non-Amish parents resist immunizations. Even in America's closed religious communities, the major barrier to vaccination is concern over adverse effects of vaccinations. If 85% of Amish parents surveyed accept some immunizations, they are a dynamic group that may be influenced to accept preventative care. Underimmunization in the Amish population must be approached with emphasis on changing parental perceptions of vaccines in addition to ensuring access to vaccines.

Seth Mnookin tried to dismiss the argument about unvaccinated Amish not having autism. What does it prove anyway? It was hardly science in the first place. Since Mnookin is so convinced that there is no link between vaccines and autism, then why isn’t he out there publicly demanding a carefully conducted, independent study comparing the health of never-vaccinated children with fully-vaccinated ones. If never-vaccinated kids also have the same health problems, including a one percent autism rate, that would finally settle the issue. With so many parents now too afraid to vaccinate, the study group is out there.

Quibbling about whether the Amish really vaccinate proves nothing.

Wednesday, June 29, 2011

An Argument for Screening

Only about half of U.S. pediatricians regularly perform the recommended tests to look for developmental delays in infants and young children, a new study suggests.
The study, reported in the journal Pediatrics, found that the number of pediatricians who routinely did the screening tests had doubled between 2002 and 2009.
But that still meant that by 2009, only 48 percent were doing these tests regularly.
The American Academy of Pediatrics (AAP) and some other medical groups recommend that doctors use standardized tests for spotting possible developmental delays in babies and young children.
A previous post included an argument against routine screening. Geri Dawson writes at the Autism Speaks blog:

Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published. The link to the original article and the letter are provided below. Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.

This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice. We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.

Read the letter, Why it is important that screening for autism be provided in routine pediatric care, here. The original paper is available here.

Tuesday, June 28, 2011

Medicaid and Autistic Youths

A recent study of Medicaid in selected states finds that treated prevalence of ASD among youths aged 3 to 17 rose from 2.26 per thousand in 2001 to 3.39 per thousand in 2005. About two-thirds of these youths qualified for Medicaid either through SSI or a home-and-community-based waiver.
From the data in the selected states, the authors estimate that about 95,000 youths in the Medicaid system nationwide had an ASD diagnosis.
See: Rafael M Semanksy, Ming Xie, and David S Mandell, "Medicaid's
Increasing Role in Treating Youths With Autism Spectrum Disorders," Psychiatric
62 (June 2011): 588

Monday, June 27, 2011

The Special Ed Squeeze

As one-time aid from the federal economic-stimulus program and the $10 billion Education Jobs Fund evaporates, states using that money to keep their special education budgets afloat are starting to come up short—in some cases putting other federal aid in jeopardy.

In South Carolina, for example, the U.S. Department of Education has threatened to cut $111 million in special education funding, an amount that matches state cuts over the past few years that the department believes were unjustified. The possibility of federal punishment has left the Palmetto State scrambling to come up with at least part of the money it previously cut.

“Next year is going to be rougher for states and school districts than any other year,” said Mike Griffith, a senior policy analyst with the Education Commission of the States, in Denver. “I will just lay money down on that.”

While states can trim most portions of their education budgets as they see fit, the federal “maintenance of effort” rule says they must keep special education spending the same from year to year, or increase it, regardless of the condition of their budgets. The requirement is intended to keep services for students with disabilities insulated from the ebb and flow of the budget cycle.

Sunday, June 26, 2011

Autism and Gay Marriage

Roy McDonald, a Republican state senator from upstate New York, has long been an advocate for people with autism. This past week, he also provided a crucial vote in support of gay marriage. As Lucian McCarty writes in The Saratogian, McDonald said that there was a connection:
"I’m trying to do the right thing. I’m basically a father, a grandfather of two disabled grandsons. You try to be a good person. You try to respect all the arguments and review it. Now we can move on," McDonald said during his discussion with reporters, explaining why he changed his vote from two years ago, when he voted the measure down with the other Republican senators.

"It’s one sensational issue. I’ve struggled over this," he said.

McDonald has also been aloof about his stance on the issue this year. "The reason I wasn’t candid is because I didn’t have my mind made up. I thought about it; it doesn’t come easy."

The senator attributed his change of heart on the issue to his two grandsons who have autism.

"You realize people in circumstances aren’t what you think they’re going to be, and you develop some sensitivity," he said.

Autism and Miss California

Serious concern about autism shows up in places where you might not expect it.

The Examiner reports:
Miss Culver City Noelle Freeman was crowned Miss California 2011 on Saturday night, according to the Miss America Organization.

Noelle ran on the platform, “A Promising Future for Autism.”
Her biography explains that the Chapman University student started volunteering with autistic kids when she was 8.

Contestants Ryan Osborn of Placentia and Holly Katherine Heiserman of San Francisco also cited autism as their cause. The latter explained that her 20-year-old brother is nonverbal and autistic. The Berkeley graduate said that she wants to become a lawyer and advocate for the disabled.

Saturday, June 25, 2011

School Choice in Arizona

This blog has mentioned school-choice programs in Oklahoma and Ohio The Goldwater Institute's Jonathan Butcher writes in The Arizona Republic:
Starting July 1, the Arizona Department of Education will screen applications for a new school choice program for special-education students. These education savings accounts will provide families with 90 percent of the funds that would have been used at a public school to teach their special-needs children. Parents can use this money for a variety of educational expenses, including speech or instructional therapy, tutoring, online programs and tuition. An estimated 17,000 Arizona families may be eligible for education savings accounts.

Nationally, school choice programs are filling a void for children whose special needs are often overlooked. Since 1999, Florida has offered a successful program for special-education students. Today, more than 21,000 students attend the school of their choice through the McKay voucher program. National comparisons show fourth-graders in the McKay program are reading at higher levels than the national average for special-needs students. Similar programs exist in Ohio, Georgia, Utah and Oklahoma.

This year, 42 states have introduced legislation to create or expand school voucher and scholarship tax-credit programs. Of the legislation considered by state lawmakers, 27 bills would create or expand programs for students like Lexie.

Arizona's program is unique among these because parents have the freedom to purchase additional services and materials if they choose, and they do not have to use the account for tuition. With the spread of online programs and virtual schools, parents have even more flexibility to find the right educational setting for their child. Families can also use the accounts to save for college. Parents will decide what programs and services are best for their children.

In April, the Institute for Justice provided some background:
The Arizona Empowerment Account Program is simple and straightforward. In exchange for a parent’s agreement to provide an education for their child in at least the subjects of reading, grammar, mathematics, social studies and science—and not enroll their child in a school district or charter school or accept a tax credit scholarship—the state will make quarterly deposits into an Arizona Empowerment Account up to an amount equivalent to 90 percent of the base support that a public school would have received to educate the child. Among other options, those funds can be used to pay tuition or fees at a private school, to purchase textbooks required by the private school, pay for educational therapies or services for the child from a licensed or accredited practitioner or provider, and to hire an accredited tutor to provide tutoring services. Upon the child’s high school graduation, any remaining funds may be used to pay for the child’s education in an eligible college or university. The program is available only to families of children with disabilities, but otherwise there is no cap on participation in the Arizona Empowerment Account Program.

The Arizona Empowerment Account is an improvement over its predecessor, Lexie’s Law, a corporate tax credit program that the Arizona Legislature passed in 2009. Lexie Law’s permits corporations and insurance companies to claim a dollar-for-dollar tax credit on their income or premium taxes respectively. The program is capped at $5 million, but unfortunately in 2009, the most recent year for which public reports are available, the tax credit program raised a mere $781,000.

Friday, June 24, 2011

Legislative Update

In Congress:

The number of the TRICARE bill by Rep. John Larson (D-CT) is HR 2288.

Rep. Carolyn McCarthy (D-NY) has introduced HR 2229, the "Student-to-School Nurse Ratio Improvement Act of 2011." The "findings" section of the bill mentions autism: "A recent study indicated that from 2002 to 2008, the percentage of children in special education with health impairments, due to chronic or acute health problems, increased 60 percent. Within this group, the rate of autism has doubled since 2002."

On June 9, the Senate Environment and Public Works Committee reported S 76, by Sen. Barbara Boxer (D-CA), the "Strengthening Protections for Children and Communities From Disease Clusters Act." During a hearing on the bill, Dr. Gina Solomon of the Natural Resources Defense Council testified to a rise in autism diagnoses, but did not present any evidence linking it to pollutants.

In the Pennsylvania Legislature, an interview with state Rep. James Roebuck:

Thursday, June 23, 2011

The Wrong Way to Deal with Behavior Problems

The Pasadena Weekly recounts a case study of how not to handle ASD kids with behavior problems:
On the evening of June 6, Tony and Mary Brandenburg convened with friends and fellow parents in front of the University Club of Pasadena. In just one hour, Pasadena Unified School District officials, parents and teachers would start arriving for an awards ceremony intended to honor the efforts of those who work on behalf of more than 2,200 students in the district’s special education programs.

But the Brandenburgs weren’t there to celebrate — they were there to protest.
Members of their small group assembled around a pickup parked in front of the club entrance and festooned with posters reading: Inclusion means everyone. Bullying is not OK.

The parents’claim? Their 8-year-old son, whose name they asked be withheld, was bullied out of his second-grade class at Sierra Madre Elementary School by classmates and their parents, the latter of whom, they report, held meetings off campus to discuss his removal. His crime? Unruly behavior brought on by autism.
According to their allegations, the parents went as far as filing police reports against the second-grader without notifying the Brandenburgs beforehand. The police dropped the matter, but now the couple says PUSD wants to place the boy in Five Acres, a therapeutic nonpublic school for emotionally troubled children.

If your are the parent of an ASD child, you are probably thinking, "Doesn't sound like FAPE in the LRE."

Wednesday, June 22, 2011

Caring for Military Kids with Autism Act

A release from Rep. John Larson (D-CT):

WASHINGTON – Congressmen John Larson (CT-01) and Walter Jones (NC-03) introduced earlier today the Caring for Military Kids With Autism Act, legislation to improve the lives of military dependents with autism.

The bill would clarify that military dependents with autism have access to medically necessary behavioral health treatments such as applied behavior analysis through TRICARE. ABA is a behavioral health treatment that has shown to be effective in improving outcomes for children with autism. Under current rules and regulations, dependents receive limited access to this effective health treatment due to the cap on the amount TRICARE may pay for these services on a yearly basis.

Additionally, the legislation would ensure coverage for these services is available for dependents of retirees.

“This bill takes a commonsense approach in ensuring that the children of the brave men and women who serve in our armed forces have access to the care they need,” Congressman Larson said. “What is most inspiring about this bill is that much of the credit for its introduction goes to concerned military families who have brought this issue before Congress. It is their advocacy and hard work that has lead to this critical piece of legislation.”

“Our service members and their families sacrifice everything for their country,” said Congressman Jones. “It is our responsibility to do all we can to protect these families, especially their children, by making sure they can access the best care available.”

Joining the Congressmen on the call were Karen Driscoll and Rachel Kenyon, military mothers of children with autism who were instrumental in the shaping of the bill as well as Peter Bell, Executive Vice President of Programs and Services for Autism Speaks.

“For the 1 in 88 military kids struggling with autism, the Caring for Military Kids with Autism Act is critical. Whether their soldier is active duty or retired - after twenty-four years of service, it is unfair to look my battle-weary soldier in the eyes and tell him he cannot retire because of our daughter’s autism,” said Rachel Kenyon of Manchester. “For all that our brave men and women do to keep us tucked safely asleep at night, we surely cannot deny our military families access to the care our warrior kids with autism deserve. This Act will allow my husband to someday retire from service with pride, secure in the knowledge that his dedication to our country has earned the care our daughter with autism needs and is entitled to."

“Military families shoulder tremendous responsibilities today - add the challenges of autism and the difficulties in accessing and paying for effective treatment, and families are understandably pushed to the brink,” said Karen Driscoll of San Diego, California. “The Caring for Military Kids with Autism Act will provide coverage for medically recommended services and help lighten the load these brave families carry. It is simply the right thing to do. This bill will eliminate the arbitrary dollar limitation on my son's treatment program and finally allow for our family to access the prescribed level of care my son requires as well as fulfill the promise of continued care when my husband eventually retires.”

Autism Speaks commends Congressmen Larson and Jones for their commitment to individuals with autism and their families, and for making autism insurance coverage a legislative priority, especially for military families,” said Peter Bell, Autism Speaks executive vice president of programs and services. “Families across the country are literally going broke trying to provide their children with the therapies they need and deserve. The fact that our military families, who serve to protect our freedom and security, could be put in this situation is shameful.”

Insurance Mandate Moves in Rhode Island

WJAR in Providence, RI reports on passage of an insurance mandate in the Rhode Island House:

Tuesday, June 21, 2011

Parents Sue Philadelphia School District

The Philadelphia Inquirer reports:
Four parents have filed a class-action lawsuit on behalf of their autistic children, alleging that the Philadelphia School District is illegally moving the children from school to school based solely on their disability.

At issue is the district's Automatic Autism Transfer Policy, which mandates that students with autism move to another school at the end of third and fifth grades. Non-autistic students do not have to move.

The four plaintiff parents, whose suit was filed Monday in federal court, claim the district is violating state and federal law by transferring students simply because they are autistic.

Autism-support classes are located in various schools throughout the city, requiring most students to be transferred every three years. Most schools that have an autism-support class have a K-2, 3-5, or 6-8 class, but not all three, according to Sonja Kerr, an attorney for the plaintiffs.
Though the suit was filed by four parents, the policy affects at least 3,000 students district-wide, said Kerr, director of disability rights at the Public Interest Law Center of Philadelphia.

"We think it's a widespread problem," said Kerr. "We think it's a long-standing problem."

Transitions are especially difficult for people with autism, and the automatic-transfer policy has been criticized by the Philadelphia Right to Education Local Task Force, a local authority charged with monitoring school districts' compliance on special-education issues.

Two of the plaintiff parents won due-process hearings this year that found that the district had violated the Individuals With Disabilities Education Act by keeping their children out of their neighborhood schools and by allowing the children's autism-support classrooms to become overcrowded.

The hearing officer said then that he did not have the authority to address the automatic-transfer policy.

Monday, June 20, 2011

Prevalence and IT

Science Daily reports:

A new study from Cambridge University has for the first time found that autism diagnoses are more common in an IT-rich region.

The Medical Research Council (MRC) funded study, published June 20 in the Journal of Autism and Developmental Disorders, has important implications for service provision in different regions and for the 'hyper-systemizing' theory of autism.

The researchers tested for differences in the prevalence of ASC in school-aged children in three geographical regions in the Netherlands: Eindhoven, Haarlem, and Utrecht-city. The region Eindhoven was selected because it is rich in information-technology (IT) … The two control regions were selected because they have similar size populations and a similar socioeconomic class. ..The researchers found school-reported prevalence estimates of ASC in Eindhoven was 229 per 10,000, significantly higher than in Haarlem (84 per 10,000) and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions.

Simon Baron-Cohen commented: "These results are in line with the idea that in regions where parents gravitate towards jobs that involve strong 'systemizing', such as the IT sector, there will be a higher rate of autism among their children, because the genes for autism may be expressed in first degree relatives as a talent in systemizing. The results also have implications for explaining how genes for autism may have persisted in the population gene pool, as some of these genes

The study acknowledges alternative explanations for the pattern: there may be overdiagnosis in Eindhoven or underdiagnosis in the control communities. Furthermore, autism awareness may be higher in high-tech communities.

Update on the New York Mandate

Autism Speaks is urging Governor Cuomo to sign the legislation that passed the New York State Legislature last week:

GREAT JOB NEW YORK! On Friday afternoon, June 17th, 2011 the Senate and Assembly BOTH passed autism insurance reform UNANIMOUSLY! We need your URGENT help in this last step toward reform to ask Governor Cuomo to SIGN autism insurance reform into law this year. We must flood his office with calls and emails! Please take a moment to send him an email by taking action below. THEN ask your friends and family who live in New York to do the same!

The Garden City Patch quotes an old friend of mine:

The New York State Senate approved legislation to enable individuals with autism spectrum disorders to receive insurance coverage for screening, diagnosis and treatment, according to Sen. Kemp Hannon.

The bill would save tens of thousands of dollars in out-of-pocket expenses spent by families caring for individuals with autism and address insurance companies’ refusal to cover costs for autism treatments and therapies.

“This significant legislation is necessary to provide families dealing with autism the assistance they both need and deserve,” said Hannon, chairman of the Senate Health Committee. “These families should not be denied the proper services and quality of care for their loved ones merely because of an autism diagnosis.

The Staten Island Advance reports:

Assemblywoman Nicole Malliotakis, a co-sponsor of the bill who was among those to highlight it at a recent Albany press conference, hailed its passage.

"A lot of families have been suffering because their health insurance doesn't cover these treatments," said Ms. Malliotakis (R-East Shore/Brooklyn).

"This is a win-win for everyone. Families will be protected and individuals will get coverage. Early intervention is so important. If we detect autism early, it changes the life of the child and saves money in the long run."

"Parents will now have the ability to get early intervention, access it earlier, get therapies earlier," she said. "The sooner there is a diagnosis and treatment begins, the better it is for the child."

Donna Long, executive director of the G.R.A.C.E. Foundation, said the bill was long overdue and would help with earlier detection of autism.

Floor remarks of the sponsor, Senator Charles J. Fuschillo:

Sunday, June 19, 2011

Rhode Island Mandate Advances

The Providence Journal reports:

The Rhode Island Senate has passed a bill that would require private insurers to provide up to $32,000 a year in benefits for medically prescribed behavioral therapies for children on the autism spectrum up to their 15th birthdays.

State Sen. Edward O’Neill and state Rep. Peter Palumbo have sponsored companion bills in both houses of the General Assembly for the past two years to help alleviate the financial strain faced by parents of children with autism, who often cannot afford early and intensive behavioral therapies that have been shown to be effective in helping youngsters learn to talk and better relate to other people and their environments.

For the most severely affected children, these treatments can cost $50,000 a year or more, according to testimony before the General Assembly.

The Senate bill, which passed Thursday, had the backing of Senate President M. Teresa Paiva Weed.

Palumbo’s bill is scheduled for a final floor vote in the House on Tuesday, according to Autism Speaks, a nationwide nonprofit group that took a lead in 2011 in organizing parents and other advocates to push for insurance coverage.

Autistic Pride Day

Yesterday, June 18, was Autistic Pride Day. A piece on Facebook provides some background:
Autistic Pride Day is a celebration of the neurodiversity of people on the autism spectrum on June 18 each year. Autistic pride is pride in autism, about shifting views of autism from "disease" to "difference". Autistic pride emphasises the innate potential in all human phenotypic expressions and celebrates the diversity various neurological types express.

According to the London Times of December 31, 2005, "Just as society learned to accept homosexuality, organisations such as the Autism Assembly and Aspies for Freedom say it should accept “neurodiversity” as something to celebrate rather than cure. In June, the organisations launched the first annual Autistic Pride Day, with events around the world, to persuade the rest of us — the “neuro-typicals” — that autistic people are “unique individuals” who should not be seen as cases for treatment."

Autistic pride asserts that autistic people are not sick; rather, they have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers. Researchers and people with high-functioning autism have contributed to a shift in attitudes away from the notion that autism is a deviation from the norm that must be treated or cured, and towards the view that autism is a difference rather than a disability. New Scientist magazine released an article entitled "Autistic and proud" on the first Autistic Pride Day that discussed the idea.

Kristina Chew writes:

It might seem odd to celebrate autism. As a parent, and a parent writing at the end of a day on which my son had a very tough episode in our car, I can't say enough that life raising an autistic child is not easy. .

It is necessary to remember that, as an autistic person -- an individual with a disability -- my son has rights: He has the right to an education. He has civil rights: As a suit filed by the U.S. Equal Employment Opportunity Commission on behalf of a man with Asperger's Syndrome underscores, you cannot discriminate against someone on the basic of her or his disability.

The Independent reports that in 2010 an 18-year-old autistic man with severe learning difficulties was "unlawfully deprived of his liberty" after being regularly placed in a seclusion room more than six times a day at a residential school for "children with complex needs."

The judge in the above case ruled that the man's "article 5 right to liberty and security under the European Convention on Human Rights had been breached." It's important that the man's "liberty" is specifically mentioned: As Dora Raymaker writes, "Autistic Rights are Disability Rights are Human":

While autism makes us different, autistic rights is really about those things we all need, autistic or not, disabled or not, minority or not: food and shelter, respect and love, and empowerment to live our own lives in freedom, happiness, and health.

Anne Dachel of The Age of Autism, takes sharp exception:

I will always sympathize with any parent living with an autistic child. Kristina Chew however, asks not only for respect for the dignity of each person, regardless of their disability, she’s surrendered to autism. I can’t stomach the idea of a “celebration of the neurodiversity of people on the autism spectrum.”
Since it seems that no one can do anything about autism, Chew wants to embrace it. She pretends it’s the new normal.
Our children’s lives were stolen from them. This must be stopped. We can’t stand by and willing give up another generation of children to autism.
Chew is no different than any of the “experts” and leaders who merely ask for awareness. Giving in to autism means we’ve given up. Will we soon have “Alzheimer’s Pride Day” ? ….Dyslexia Pride Day? …….ADD Pride Day? ………..

Saturday, June 18, 2011

New York Senate Passes Autism Mandate

AP reports:
State lawmakers passed legislation Friday that would require New York insurers to cover screening, diagnosis and treatment for autism spectrum disorders.

That would include routine toddler screenings, behavioral health treatments, speech therapy, occupational therapy and physical therapy, sponsors said. While Medicaid is the main reimbursement source and some services are provided in public schools, they said many parents struggle to pay treatment that still costs them thousands of dollars annually.

"Families that need help paying medical bills for their loved ones can finally get the coverage they deserve," said Sen. Roy McDonald, a Saratoga County Republican. He has two grandchildren with autism.

Lawmakers said the bill prohibits insurers from terminating or refusing to execute a policy solely because someone has been diagnosed and received treatment for autism spectrum disorders. If signed into law, New York would follow 25 other states with similar measures.

Gov. Andrew Cuomo is reviewing the bill, spokesman Josh Vlasto said.

Last year, Gov. David Paterson vetoed a similar measure, estimating it would increase state and municipal insurance costs $70 million annually, including higher health insurance premiums.

Friday, June 17, 2011

Abortion and an "Autism Test"

Back in January, the Deseret News reported:

Against the backdrop of a dramatic increase in the incidence of autism, a Utah company today will formally launch genetic testing and related counseling to help family doctors and pediatricians with early diagnosis of some autism spectrum disorders (ASD).

Lineagen's FirstStepDX testing looks for genetic factors known to be associated with ASD and developmental delay, said Michael Paul, president and CEO of the company. He said studies have shown that autism treatment, called "Early Intensive Behavioral Intervention," is effective in children as young as 18 months, so early diagnosis is critical.


Autism's heritability factor is estimated at about 70 percent. Breast cancer heritability is around 30-40 percent, Paul said. Most diseases also have an environmental component. But the strength of that genetic component in autism is why genetic counseling is so important for families, and Paul said that is why Lineagen built it into the test in the report that explains the results, guidance for the local doctor and the ability to talk directly to one of Lineagen's genetic counselors as part of the testing process.

Consumers cannot buy the test directly but must go through a physician. Many insurance policies will cover its cost.

Lineagen also offers an on-line version of the Modified Checklist for Autism in Toddlers (M-CHAT) at , a developmental screening tool for toddlers 16 to 30 months old, and plans to add other free Web tools.

At The Age of Autism, Kevin Barry takes a darker view of the development:

Lineagen, a biotech company based in Utah, is now marketing a blood test which identifies "new genetic variants associated with ASD (Autism Spectrum Disorders)" . (See Lineagen HERE) At this time, Lineagen positions its product as a post natal early intervention tool - not as a prenatal test. However, with autism rates conservatively affecting one in every 70 boys born today, expecting couples are rightfully concerned about autism. FirstStepDX is an easy, single draw blood test that could be added to routine prenatal OB/GYN appointments.

Lineagen's website explains this simple process of their FirstStepDx blood test:

What does the testing process include?

Lineagen’s FirstStepDx combines two state-of-the-art genetic tests: whole genome chromosome microarray analysis (CMA) and fragile X testing.

Two blood samples are taken from the person undergoing testing and are obtained during a single blood draw. From these samples DNA is extracted, which is then used for genetic testing.

The FirstStepDx test comprises a comprehensive service that includes pre- and post-test genetic counseling and a detailed report delivered in an easy-to-read format, suitable for both physicians and families. Lineagen Our Services HERE

The Lineagen site also describes the test's use of new genetic variants:

Over the past several years, powerful research possibilities have emerged, particularly related to the identification of new genetic variants associated with ASD, MS, and COPD. Furthermore, Lineagen has in-licensed best-in-class genetic research data from notable establishments, including the Children’s Hospital of Philadelphia (CHOP) to form the most extensive proprietary data set on ASD in the world. About Lineagen HERE


The NIH Office of Autism Research Coordination proudly displays its work on "genetic risk factors." Some autism non-profit groups, in support of the 2011 Combating Autism Re-authorization Act, put the identification of "several autism susceptibility genes" on the short list of the top reasons to continue supporting millions of dollars of government funded autism research each year.

Blood tests are now available to test for genetic variants associated with autism. Universal Family Church believes it is outrageous that the fruit of past government research have been used to create tools that could be used today for selective abortions - abortions potentially performed based on only a slight probability that a child might develop a disability or disorder.

A couple of items from the comments section:

I just complained to the FDA (you should too) because, while this company is and should be free to market government approved tests for Fragile X to anyone they want, conflating the broad term "autism" with Fragile X appears to me to be highly misleading and unethical. Unlike many here, I support genetic research because I think it'll uncover therapies for SOME subtypes on the spectrum.

Unfortunately, allowing companies like Linagen to make overly broad and misleading claims about autism testing will set back genetic research. The folks at ASAN are going to have a field day with this one.

If they have the DNA of autism families collected and catalogued in a genomic database then they can just screen fetal tissue even embryos against this DNA. So whether or not a child has Fragile X or some other purely genetic condition, as long it as show similar DNA (meaning a risk for autism) to that in the autism genome database then that might frighten new parents enough to abort or select Pre Implantation Genetic Diagnosis (PGD).

What is PGD?

Who will survive? It'll come down to the fit vs. unfit.

Just makes me sick.

Thursday, June 16, 2011

Chaka Khan Lobbies for CARA

The Washington Post reports on Chaka Khan, lobbying for the Combating Autism Reauthorization Act:

Celebrities — not all of them have had it that easy. An occasional look at the stars bringing hard-earned knowledge to Washington. Tuesday’s guest:Chaka Khan

Venue: Longworth House Office Building.

Concern: The recent uptick in autism diagnoses among African American and Latino boys.

Bona Fides: 10-time Grammy winner, aunt of an autistic boy.

Backup: Her sister/manager Tammy McCrary, actress Tisha Campbell-Martin, D.L. Hughley’s wife LaDonna — all moms of autistic boys, who’ve made a documentary, “Colored My Mind,” about their struggle.

What she wants: For Congress to reauthorize the Combating Autism Act, set to expire this year.

How she looked: Simple black pantsuit, heavy gold bling. When asked for a photo, she struck a pose with a black-and-red fan.

Quote: “It’s a struggle for mankind. This transcends everything, all the little petty groups.”

The Washington Examiner adds some detail:

"I'll bet one of my paychecks that either someone in their family or someone very close to them knows somebody that has autism happening in their immediate realm," the R&B legend told Yeas & Nays on Monday afternoon. Khan's sister and manager, Tammy McCrary, has a son with autism.

"It's just horrific," said Khan. "It seems to be like a thief in the night that comes and takes our children's minds, mental awareness and physical awareness, too. I think something needs to be done and I think we need to get back on the pony again and ride it for all it's worth to get help and awareness out there for every community."

Wednesday, June 15, 2011

Global Alliance for Vaccines and Immunizations (GAVI)

When the media writes about vaccines in the U.S. and Europe, usually we're reporting on the endless controversy over whether some vaccines cause autism. (Short answer: they don't.) That's the luxury of wealth and health — thanks in no small part to the 20th-century legacy of mass vaccinations, virtually no parent in the developed world needs to worry that their child will be carried off by measles or rubella or polio or any of the other childhood diseases that once terrorized families. Vaccination is almost certainly the greatest triumph in the history of public health, even if it's one that many otherwise intelligent people feel free to turn their backs on.

In much of the developing world, however, access to vaccination can still mean the difference between life and death — and too often, it's the latter. That's why Monday's news from London that the Global Alliance for Vaccines and Immunisations (GAVI) had far surpassed its funding goals — raising $4.3 billion — is so welcome for global health.

A White House blog post by Gayle Smith:
During a time when we all – including the federal government – need to live within our means and find places to cut spending, any investments made by your government need to meet the test of whether it is an effective and efficient use of taxpayer dollars.

Immunizing children from preventable diseases meets that test. As USAID Administrator Raj Shah announced in London on Monday, by making a multi-year commitment to the Global Alliance for Vaccines and Immunizations (GAVI), the US is able to get the most from our investment – leveraging a pledge of $450 million over three years more than eight-fold into billions of dollars in commitments from other donors, including the UK, the Gates Foundation, Norway and others.

Together, these commitments will help save the lives of 4 million children over the next five years, by getting more vaccines to more children and by helping to ensure the quantities of vaccines needed to lower the prices for new vaccines such as those that protect against pneumonia and diarrhea, the world’s two most potent childhood killers. All in all, we will be able to immunize more than 250 million children and prevent more than four million premature deaths.
Gayle Smith is Special Assistant to the President and Senior Director for Development and Democracy for the National Security Staff

A different perspective from a protest in London:

News about Autism and Service Animals

"There is hardly a political question in the United States which does not sooner or later turn into a judicial one." -- Alexis deTocqueville

The Orange County Register reports:

A boy with autism should be allowed to take his service dog with him when he attends elementary school, a federal court judge ruled Tuesday.

U.S. District Court Judge Andrew J. Guilford granted a preliminary injunction compelling the Cypress School District to allow the dog at a Cypress elementary school until a civil trial can put the matter to rest in September 2012.

Attorneys for the school district argued against the order, contending that existing law couldn't force school personnel to look after the animal.

In his ruling, Guilford wrote that accommodating the dog would not "fundamentally alter" the school's program. However, in order to address the potential costs to the district, Guilford also ruled that the boy's family must post a $50,000 bond before the injunction goes into effect.

Paul and Milka Ciriacks in May 2010 got the $14,000 service dog, Eddy, for their son Caleb.

According to court filings, Eddy is trained to sense Caleb's mood, curbing impulsive or destructive behavior and calming him when he is feeling anxious. In the filing, the Ciriacks' attorneys cite experts who say the boy must be accompanied at all times by the service dog in order to develop and maintain a bond between them.

"Being forced to be separated from his service dog for 6.5 hours during the school day is causing that bond to deteriorate," said Maronel Barajas, a senior staff attorney with the Disability Rights Legal Center.

WDSU-TV in New Orleans reports on an odd case involving service monkeys:

A woman fighting to regain custody of her pet monkeys collapsed in municipal court Tuesday after learning from a judge she can't have them back yet.

Officials from the Louisiana Department of Wildlife and Fisheries took the monkeys away four months ago after they said their owner, Joan Newberger, was panhandling with them on Bourbon Street during Mardi Gras.

But Newberger said she is autistic and uses the primates as service animals.

WWL-TV in New Orleans covered the story back in February:

Tuesday, June 14, 2011

Autism and Community Living

Michelle Diament reports at Disability Scoop:
As the public comment period draws to a close on a federal proposal detailing what qualifies as community-based housing for people with disabilities, the issue is sparking controversy.

The proposal from the Centers for Medicare and Medicaid Services was first announced in April and is open for comment through Tuesday.

Under the plan, residences that include “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community” would be excluded from Medicaid home and community-based services waivers.
What’s more, qualifying homes could not be designed exclusively for people with disabilities.
Federal officials say they recommended the rules update after hearing about situations where new housing dubbed “community-based” was being built on the site of existing institutions.

However, some parents and disability advocates are criticizing the changes saying that they would limit options for adults with disabilities who may desire to reside near those like themselves.

All can agree that the atrocities of institutionalization must never be repeated, but the NY Times study in March 2011 exposed institutional-like abuses, not done in a large congregate care facilities, but hidden under our noses in urban and suburban group homes with less than 6 residents. One cannot even begin to imagine “community” in the midst of physical, spiritual, and financial abuse. With the advances in affordable security technology, education on self-determination, and person-centered philosophies, the fact that this kind of abuse still occurs is a slap in the face of humanity. If the CMS seriously desires to set standards and expectations of service providers, major initiatives of accountability, continuing education, and incentives of Direct Care Providers are needed!

Thus, the definition of “community” should not in any way be tied to physical size, number of residents, or geographic access to public amenities in unrealistic hopes to avoid institutional-like abuses. Community is synonymous with relationships, and relationships are found between the hearts of those who live, work, and play together. If the CMS desires to identify home and community-based settings, they must evaluate people, not places.

Gene Bensinger reflects on the proposed change here.

The Autistic Self-Advocacy Network says:

We appreciate this opportunity to provide comment on CMS’ proposed rulemaking providing for minimum standards for HCBS settings. The proposed rule would require that HCBS settings must be integrated in the community, must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care, must not be located on the grounds of, or adjacent to, a public institution, and must not be a housing complex designed expressly around an individual’s specific diagnosis or disability. We strongly support these protections. HCBS funds are limited and designed to serve specific purposes, not to be available to any and all settings which operate under the name “community”. By putting in place minimum standards to ensure that Home and Community Based Service are delivered in the community, CMS will be taking an important step towards protecting the civil rights of Americans with Disabilities and in securing the integrity of the Medicaid program. This rule will ensure that HCBS funds are not spent in settings which are congregate in nature or have the characteristics of an institution. We believe that it is imperative that CMS follow through on its proposed rulemaking.

Contrary to concerns raised that such a measure will limit choice, we believe that these minimum standards will enhance choice for people with disabilities and family members. HCBS funds represent one of several funding streams for long term services and supports. Institutional settings possess their own funding streams, and the corruption of HCBS funds for institution-like settings restrict the choices available to individuals and families by forcing a choice between two institutional settings. By putting in place minimum standards, we anticipate this rule will serve as the impetuous to a wave of innovation for supportive housing arrangements that give people both immediate, permanent housing in their own apartments or homes and access to voluntary, supportive HCBS services designed by the individual and provider to ensure success. By ending a state of affairs in which both institutional and HCBS funding streams fund settings which have the qualities of an institution, choice will only be enhanced for individuals with disabilities and family members.

Monday, June 13, 2011

An Argument Against Screening

The Hamilton Spectator (Ontario) reports:

An autistic diagnosis changes the course of child’s life, and their parents’.

What if it isn’t true?

That is something McMaster researchers are trying to avoid, asking for a call to action from the research community against a recent proposal recommending routine autism screening for all children.

“You could miss-label a child,” said McMaster researcher Dr. Jan Willem Gorter. “We know that a child can be over diagnosed based on symptoms. For example, if a young child doesn’t respond to its name it could well be an early sign of autism.

“But it could also be something as simple as a hearing difficulty.”

Gorter is a researcher for McMaster’s CanChild Centre for Childhood Disability Research and associate professor of pediatrics. His findings in a literary review suggest that there are no good screening tools and no evidence that routine screening will do more good than harm, contrary to a recent recommendation by the American Academy of Pediatrics (AAP) incorporate autism screening into routine practice.

Gorter was quick to caution that there is a big difference between routine screening -- which means surveying everyone, including apparently healthy people -- and clinical surveillance, which means surveying those who present with impairments that indicate a possible problem.

"We as a group think that if parents have concerns, they should go for surveillance," Gorter said. "But routine screening doesn't necessarily address that and at this point, it may be premature."

The AAP, which currently has 60,000 pediatrician members, currently recommends all children be screened at specific intervals, regardless of whether a concern has been raised, saying that pediatricians play a key role in early recognition of disorders.

Other groups have also thrown their support behind that recommendation.

In an email, Dr. Geraldine Dawson, chief science officer of Autism Speaks, the nation's largest autism science and advocacy organization, said the group supported the AAP's recommendation that children be screened at their 18 and 24-month checkups.

"Early intervention has been shown to result in significant increases in cognitive and language abilities and adaptive behavior," she said, "allowing children the best chance for a positive outcome."

The abstract:

Early Autism Detection: Are We Ready for Routine Screening?

Mona Al-Qabandi, MD, MRCPCHa, Jan Willem Gorter, MD, PhD, FRCP(C)b,c, Peter Rosenbaum, MD, FRCP(C)b,c

Background. Autism is a serious neurodevelopmental disorder that has a reportedly rising prevalence rate. The American Academy of Pediatrics recommends that screening for autism be incorporated into routine practice. It is important to consider the pros and cons of conducting autism screening as part of routine practice and its implications on the community. We have explored this question in the context of screening from a scientific point of view.

Method: A literature search was conducted to assess the effectiveness of community screening programs for autism.

Results: Judged against critical questions about autism, screening programs failed to fulfill most criteria. Good screening tools and efficacious treatment are lacking, and there is no evidence yet that such a program would do more good than harm.

Conclusions: On the basis of the available research, we believe that we do not have enough sound evidence to support the implementation of a routine population-based screening program for autism. Ongoing research in this field is certainly needed, including the development of excellent screening instruments and demonstrating with clinical trials that such programs work and do more good than harm.