Mandate Stalls in North Carolina

Carolina Public Press reports on a proposed insurance mandate in North Carolina. The arguments for and against are similar to those in other states.

With the North Carolina General Assembly’s long session now concluded, legislation that would have required all health insurance companies in the state to cover the diagnosis and treatment of autism won’t become law this year.

But the Autism Society of North Carolina, a nonprofit advocacy group based in Raleigh, says the complementary Senate and House bills in committee could be revisited during the General Assembly’s short session beginning around in May 2012.

Senate Bill 115 has been in the Senate’s Committee on Insurance since Feb. 24, the day it passed a first reading in the Senate and a day after it was filed. Comparable House Bill 826 similarly has been in the House’s Committee on Health and Human Services since the House passed a first reading of it April 7.

Jennifer Mahan, director of government relations for the Autism Society of North Carolina, said Monday, “in general, insurance law that mandates additional coverage is never popular in North Carolina.”

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Mahan said a legislative fiscal note attached to the proposed legislation put the cost at an additional $10 million to $13 million a year for the state health plan, though Mahan said the Autism Society think the cost would be more in the range of $5 million to $7 million a year.

“We think there’s a significant ramping-up period,” she said, which would decrease initial cost estimates. For example, Mahan said, South Carolina has seen about half of the expected utilization of state-mandated autism diagnosis and treatment coverage than expected.

And besides the cost issue, Blue Cross and Blue Shield raise the usual objection that ABA is educational, not medical.

Radio Report on the California Managed Care Agreement

KPCC-FM reports on the recent California managed-care agreement, and finds that there is much less to it than meets the eye:

http://media.scpr.org/audio/upload/2011/08/09/autism.mp3

Causation and the Environment

The New York Times reports on recent studies suggesting environmental causes of autism:

But “environment” is a tricky word. To many scientists studying autism, it means “everything that’s not the inherited DNA,” said Irva Hertz-Picciotto, a professor of epidemiology at the University of California, Davis, MIND Institute. An environmental influence might be a chemical the fetus is exposed to via the placenta, or it might refer to aspects of nutrition, maternal health, stress — or perhaps exposure to a microbe.

The causal links most strongly supported by research include rubella infection during pregnancy and prenatal exposure to medications like thalidomide and valproic acid, an anti-seizure drug. Other environmental factors, like air pollution and exposure to certain pesticides and other chemicals, have been found to be associated with autism, but without evidence of causality.

In a 2010 paper in the journal NeuroToxicology, Dr. Amir Miodovnik, a pediatrician at the Mount Sinai School of Medicine, and his colleagues showed that children who had been exposed to high levels of phthalates prenatally were more likely to show social impairments at 7 to 9 years of age.

Phthalates, chemicals found in many consumer products, are so-called endocrine disruptors, hormonally active substances that can interfere with a variety of developmental processes, including brain development. Yet these data don’t demonstrate cause and effect, Dr. Miodovnik said, “only that these substances are associated with symptoms found in autism.” Conversely, taking prenatal vitamins around the time of conception has been associated with a lower risk of autism in a recent study.

These epidemiologic associations may point us in the direction of still other factors involved in the making of autism. “Every case is probably a result of the confluence of many factors,” Dr. Hertz-Picciotto said. “No case probably has one cause.”

The Brownsville Herald reports:

Researchers conducting a study in Harlingen hope to learn whether genetics or the environment are factors in the development of autism.

Twenty Mexican-American children 2 to 5 years old are participating in the pilot study under way at the Regional Academic Health Center here. They are being accompanied by their mothers.

Hispanics are less likely than non-Hispanic whites to be diagnosed with autism, according to a press release by the University of Texas Health Science Center at San Antonio, which is conducting the study.

Researchers are trying to learn whether Mexican-Americans have a genetic composition that makes them less susceptible to developing autism, or if diagnosis is being unrecognized, said Beatriz Tapia, field investigator for the study and a faculty associate with the Health Science Center’s Department of Family & Community Medicine of the School of Medicine.

Voice of America has a report on broader research on environmental influences on children's health, including autism, among others:

Does the Internet Cause Autism?

Martin Robbins writes at The Guardian about claims of a link between autism and the Internet, which have attracted media attention:

To her critics, Susan Greenfield is a loose cannon, using her influence to spread scare-stories about the influence of technology on the media as satirized in this blog last week. Her most recent comments in New Scientist, casually linking internet use with autism, angered Oxford neuropsychologist Dr. Dorothy Bishop, leading to a high-profile spat between the two.

Greenfield's defenders - and the scientist herself - say that she has been misrepresented, that sensationalist journalists may have distorted her measured attempts to prompt discussion and highlight gaps in research. Certainly headline writers have had a field day with her claims - a quick search of The Daily Mail finds:

• Facebook and Twitter are creating a vain generation of self-obsessed people with child-like need for feedback, warns top scientist
• Social websites harm children's brains: Chilling warning to parents from top neuroscientist
• Facebook and internet 'can re-wire your brain and shorten attention span'
• Modern technology is changing the way our brains work, says neuroscientist
• How Facebook addiction is damaging your child's brain: A leading neuroscientist's chilling warning

Strong stuff, but the relationship between title and content in newspaper articles is often obscure, and in her interview with Frank Swain for New Scientist Greenfield declares (my emphasis)¹:

"I didn't say, and I've been misquoted universally, that [technology] rots the brain and it's bad, I've never given value judgements, ever."

"I've never given value judgments, ever" is a pretty strong claim, so let's look at two newspaper articles penned by Greenfield herself. These are articles which she presumably either wrote, or was willing to put her name to. Here is a selection of quotes from them:

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Our brains are "under threat", the 21st century is "doing damage" to our brains, we are already seeing "fragmentation of our culture." If Greenfield doesn't stand by this stuff - written under her byline - then she should make it very clear; because if these aren't value judgements about the negative impact of technology then I'm an Ewok.

Personal Injury Lawyers, SSRI medications, and Autism

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

A press release:

According to a July 4, 2011, piece in the New York Times, an article published in the Archives of General Psychiatry reported “an elevated risk of autism in children whose mothers took a popular type of antidepressant during the year before delivery.” These drugs, so-called SSRIs, include Paxil (paroxetine). According to the Times, “Dr. Joseph Coyle, the editor in chief of the psychiatry journal, called the [study] ‘[a] game changer….’”

Previous studies have attributed to Paxil birth defects in children born to mothers who were taking the drug while pregnant. These include: clubbed foot; cleft lip/palate; delayed development; persistent pulmonary hypertension; gastrochisis; heart defects; skull defects; and brain/spinal cord defects. Moreover, Paxil can cause premature birth or even miscarriage. And a child exposed to Paxil in utero can experience withdrawal symptoms after birth.

The new site, http://www.paxilbirthdefectlaw.com, has features that allow for easy sharing, including links for automatic posting on Facebook and Twitter, specifically to enable visitors to spread the word about Paxil and the dangers of the drug. The Rottenstein Law Group, a personal injury firm, encourages visitors to link to its sites from their own blogs and Web sites to spread information about defective medical products and dangerous drugs.

At the Capital Research Center, Martin Morse Wooster takes a critical view of the role of personal injury lawyers in this issue.

A Questionable Autism Charity

The Minneapolis Star-Tribune reports:

Jane Anlauf thought she was helping a worthy cause. When an organization called the Autism Spectrum Disorder Foundation (ASDF) called the 81-year-old Minnetonka woman in May, she agreed to solicit contributions from her friends and neighbors on their behalf.

But if the organization's IRS filing for 2009 is any indication, the fruits of her labor will mainly be used to pay for marketing material and worker wages at two national telemarketing call centers.

Anlauf received glossy literature and donation forms from the tax-exempt charity. She used her own stamps to send the material to her friends. She collected checks and mailed them in.

Her first indication that something might be amiss was when she called the Autism Society of Minnesota seeking the ASDF's address so she could forward a neighbor's late check. She was surprised to be told they had received a number of complaints about ASDF.

Based on the reports received so far, "we're not aware that any [ASDF] dollars are going to people living with autism," according to spokesperson Shannon Andreson. "We have been telling people to contact the attorney general's office.

The ASDF has been a thorn in the side of the Autism Society of America as well. According to society president Scott Badesch, telemarketers for ASDF have been falsely telling potential donors that they are either associated with the society or that the society endorses their work. The society has sent them two cease-and-desist orders.

"We don't do any soliciting over the phone," Badesch said. Nor does the Minnesota chapter, according to Andreson.

Also see previous coverage of the "charity" at Nonprofit Quarterly, the Neurodiversity Weblog, and the Autism Society.

More on First Responders

The Boston Globe reports on a program for first responders:

Westwood Fire Captain Bill Cannata has spent the last six years teaching first-responder firefighters how to recognize the symptoms of autism at an emergency scene so they know how to best approach someone with the disorder who is in distress.

The first-of-its-kind program, which has reached 17,000 professionals in all corners of New England, will now expand to 13 other states, including Oklahoma and West Virginia, with the help of a $52,780 federal Assistance to Firefighters grant from the Department of Homeland Security.

Cannata helped launch the Autism and Law Enforcement Education Coalition in 2005 as a collaboration with the Norfolk district attorney’s office and the South Norfolk County ARC’s Family Autism Center. Startup funding came from the Dedham Institution for Savings.

Today the program is funded through the Autism Spectrum Division of the state Department of Mental Retardation, to the tune of some $35,000 a year, augmented by various small grants. The new federal grant will allow Cannata and his business partner and the center’s director, Betsy Roche, to go national.

Also see a story from Indiana.

PBS on ASD Adults and the Future

The PBS program "Need to Know" looks at ASD adults:



Peter Bell of Autism Speaks talks about the future of adults on the spectrum:

Michigan and the "Mandated Offer"

Business Review West Michigan reports that Hope Network CEO Phil Weaver plans a major push for a mandate in Michigan. Michigan Chamber of Commerce CEO Rich Studley has a counter-proposal.

Blue Cross Blue Shield of Michigan in 2009 began offering employers with mental health coverage the option to buy coverage for intensive early intervention for children with autism.

“We recognize that all families care about their children. We believe that we have been more progressive than other Michigan insurance companies in addressing autism,” Blue Cross Blue Shield spokeswoman Helen Stojic said. “To the best of our knowledge, we are the only insurer in Michigan to offer this coverage option.”

As a compromise to the issue, the Michigan Chamber supports a “mandated offer” that would require health insurers to offer autism coverage to employers to buy for employees who want it.

“We would be open to that,” said Studley, calling a mandated offer a “more market-oriented solution.”

Weaver responds that the push for mandated coverage stems from insurers not offering it.

"The two options are mandate or choice. Today, insurance companies have the choice to provide coverage for children with autism and the majority are not providing any coverage," he said. "We need to ensure that children with autism have a greater opportunity for independence, and if the insurance companies are not going to choose to cover it, like they cover diabetes or cancer, then we need to support a mandate."

Marijuana and Autism in the OC

Previous posts have dealt with the use of marijuana in treating autism. In Orange County, California, OC Weekly's Matt Coker reports:

A Denver biotech company and Los Angeles nonprofit foundation dedicated to the treatment of autism are disavowing their previously announced partnership with UC Irvine.

The clarification comes more into focus when you know the players. The firm, Cannabis Science, develops pharmaceutical products from marijuana plants. The Unconventional Foundation for Autism (UF4A) promotes cannabis-based medical research and clinical trials for those afflicted with the disorder.

A March 20 Cannabis Science announcement about its partnering with UF4A included this line:

"To date, we have already partnered with the University of California Irvine Medical Center to oversee our cannabis-based Autism research. Included in this group of advisors is the Dean of Medicine at UCI, and child psychiatrist Dr. Rebecca Hedrick, M.D."

The use of cannabis to treat autism is portrayed as the subject of a presentation Hedrick made earlier this year, according tothe UF4A website.

However, this week, Cannabis Science released the following:

Cannabis Science wishes to clarify that the partnership is only a partnership with UF4A. Cannabis Science has no relationship or affiliation with the University of California, Irvine, the Dean of the UCI School of Medicine, or any of its faculty ("UCI"). UF4A has no affiliation with UC Irvine, though UC Irvine psychiatrist treats the autistic son of UF4A founder, Mieko Hester-Perez. Neither UCI nor Dr. Hedrick is conducting research into medical marijuana and autism.

In 2010, California voters rejected a ballot measure that would have legalized marijuana in the state.

Firefighters and Autism

Previous posts have dealt with the often-troubled interactions between police officers and people with autism. But other first responders also need to be aware of autism. Fire Captain John M. Sokol writes to his colleagues:

A first responder is seven times more likely to come in contact with an individual with autism than the average person. If you haven't already met someone with autism, you soon will.

...

When you are first made aware a situation involves an individual with autism, first and foremost, when possible arrive on scene without the use of sirens or flashing lights.

Sound and light sensitivity is common in autism and may trigger a seizure or cause the individual to shut down or hide, making the situation worse.

Next, there are key questions you should ask a parent or caregiver ranging from, "Is the individual verbal or non-verbal? How does the individual react under stress? What usually works to calm them down?" Knowing the answers can save you valuable time by letting you know what to expect and what approach to take.

Both children and adults with autism are likely to hide in a fire situation. Your search should include any tight, out-of-the way place you would least expect to find someone.

Upon finding the individual the first responder should speak slowly, with clear directions and not with force, which could cause the individual to possibly shut down further.

Please bring the proper tools for the situation. Forced entry or exit will be most likely. Families often need to lock doors, including interior doors, to keep individuals with autism from wandering. Barred, nailed or locked windows along with Plexiglas or Lexan windows can make access or escape a problem for rescues.

Some individuals with autism may be sensitive to touch, while others do not have a normal range of sensations and may not feel the cold, heat or pain in a typical manner.

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Don't let individuals with autism out of your sight — they may be a bolt risk after rescue. Someone must stay with the individual at all times as, not comprehending danger, the individual may run out into traffic or back into a place they were just rescued from.

Needless to say, these cautions do not apply to all ASD people. Not all have seizures. Many are highly verbal and are not at risk for bolting.

A Disturbing Story

NWI.com reports on a story from Lansing, Illinois:

Julia Cox fears a speeding motorist one day will hit her 21-year-old son on her street.

"My son has autism," she said. "You picture a 21-year-old taking off like he's 3 years old, and I can't do anything about it. I don't want him to run out in the street, but sometimes he just does."

For more than a year, Cox, 46, begged the village to put up a sign to warn motorists to drive with extra care in the area. In January, a sign reading "Caution: Handicapped Person" was erected near the end of her driveway, in the 18400 block of Ridgewood Avenue.

On July 22, the sign was vandalized.

"Retard F U" was written across the bottom of it in thick black ink. Cox was hurt and angry.

"My son is not retarded; he has autism," she said. "I can only imagine how many other single parents are mothers like me who are going through the same thing, and this is not what we need. I don't bother anybody. He doesn't bother anybody. Why would somebody do this?"

Lansing police took a criminal damage report July 23, but they are apprehensive to allocate resources to do a full-blown investigation, Lt. Dan Sylvester said.

Kristina Chew adds:

I’ve seen signs saying “autistic child” in our neighborhood (like the one illustrating this post), just as one sees signs for a child who’s deaf or hearing impaired, or for someone who is blind or visually impaired. Disability rights advocates prefer not to use the word “handicapped” as it puts most of the emphasis on a person’s limitations; I’m not sure if wording the sign in front of Cox’s house differently might have made a difference. Authorities in her town might be advised to learn about the tragic case of a British mother, Fiona Pilkington, who killed herself and her severely disabled daughter, Francecca Hardwick, in 2007, after years of harassment by youths who threw stones, flour, bottles and other objects at their house, jumped in the front hedge, and sometimes just loitered around for hours shouting abusive language.

Senate Committee Delays CARA

Autism Votes reports that a Senate meeting on CARA fell victim to the debt debate:

Senate HELP Committee Reschedules Meeting for September 7

The U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has announced that it has rescheduled a hearing on the Combating Autism Reauthorization Act (CARA) for September 7. The meeting had been scheduled for this Wednesday Aug. 3, a date that unfortunately landed in the midst of the debt ceiling debate which has consumed Congress for much of the summer.

The HELP committee meeting is an important first step in renewing the historic 2006 law which guides the federal government's response to the staggering rise in autism. Autism Speaks thanks everyone in our advocacy community for their hard work to date and urges you to be ready to resume the fight soon as we work to get this bill that is so essential to our families through Congress.
The CARA bill is sponsored in the Senate by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) To date, 22 other Senators and 53 House members have signed on as cosponsors.

Visit our CARA Action Center to find if your Senators and Congressmember are sponsors.