Placentas, Early Diagnosis, and Abortion

On the Ivanhoe Newswire, Dr. Harvey Kliman talks about his research on abnormal folds in the placenta as a way to identify children who are at risk for autism.

How significant is this in helping with the early detection of autism?

Dr. Kliman: Before this test, the PlacentASD test, as we call it, there is no method at birth to know this at all. There is zero method, so parents would normally, if they do not have a child with autism already, not notice this until the child is two or three years of age. The CDC, the Centers for Disease Control, who looks at the frequency of autism and the ppolrevalence; how many families have it, they recently came out in March of this year with an estimate of 2%; 1 out of 50 children now born in this country are diagnosed with autism. They have actually shown that sometimes families do not know until their child goes to school in kindergarten.
...
So, just help me here, how significant is that because there is no cure for autism. People, who are diagnosed, if that is the correct term with autism, live with that for their life and there are obviously therapies, etc. to try and help them. So, what is the significance of this?

Dr. Kliman: That is a great question and while it is true that the genetic basis for what causes autism is in these people, if we have early intervention, we can help these children become socialized, so they can fit in to the point where we cannot even tell that they have any condition. Let me also point something out, people have said to me, ‘can this test be used for prenatal diagnosis, diagnosis before delivery, because maybe a family would want to terminate a pregnancy.’ And I am completely against that. [emphasis added] The reason is, is that these children are exceptional. Many of them are very smart. There are many professors with autism at MIT right now. When we look at Google and Facebook and Microsoft, and maybe even Apple computer, we are talking about people who are brilliant; who are very creative, but they are not quite adapted to social interactions. They are not as empathetic as a normal person might be for example. If we can train children early to respond to someone being upset, or someone being hurt, we can take someone who is exceptional, and actually very smart, with spatial recognition and mathematics, and things like that, and have them be happier. That is why I think it is so important to make this diagnosis early to give these children, and then adults, the best chance possible to be productive members of our society.

Dr. Kliman's objections notwithstanding, it is highly plausible that a prenatal test would indeed lead to abortions.  In the majority of cases where amniocentesis indicates Down Syndrome, the pregnancy ends in abortion.

Money to Keep an ASD Student Out of School

In Sacramento, KXTV reports:

The mother of a child with severe autism and diabetes said two school districts are violating her son's right to an education.

Heather Houston has been involved in ongoing negotiations with Yuba City Unified School District (YCUSD) and the Sutter County superintendent of schools (SCSOS)since last year.

According to Houston, they've discriminated against her son, David Swanson, and refused to follow his individualized education program (IEP). They've even barred him from campus with his private duty nurse, despite doctor's orders.

On the first day of school in mid-August, the nurse refused to sign a medical release form which would allow the district's school nurse to communicate with Swanson's doctor and care for him. Houston said the school denied him and the nurse entry because of the nurse's refusal, even though the waiver reads the refusal will not affect the student's education.

PREVIOUS STORY: Mom: School endangers, discriminates against son with autism, diabetes

Houston said school officials are going to extreme lengths, even offering tens of thousands of dollars to keep Swanson out of school.

"They don't have a right to do it to anyone," Houston said. "And they don't have a right to do it to David."

Houston said she just wanted YCUSD and SCSOS to comply with the law. According to Houston, it's never been about money and their unsolicited payment offers show how far they are willing to go keep him out of school.

The first settlement offer came in June. Houston was offered $50,000 to take Swanson out of their school district.

Houston rejected it.

Then another offer was made Aug. 27. It was for $86,000.

Federal Guidance on Special Ed for Military and Other Highly Mobile Students

An earlier post discussed challenges facing military families, who must move often. Autism Speaks reports:

In response to longstanding concerns raised by military families subject to frequent relocation, local school districts have been directed to provide special education and related services for transferring military students that are "comparable" with what they received at their previous school. An estimated 23,500 children in military families have autism.

The directive was issued as guidance by the U.S. Department of Education's Office of Special Education and Rehabilitative Services (OSEP) for local school districts around the nation to understand their obligations under the federal IDEA Act and their responsibilities to satisfy the IEPs of "highly mobile students," such as those in military families, migrant families or foster care, or the homeless.

Military and other highly mobile students frequently face challenges with school districts and often have very little recourse due to ongoing relocation. Due process proceedings are time intensive and the family may be required to move again before any conflict can be resolved.

Click here for the OSEP letter to state special education directors,

Click here for an analysis of the letter.

Disabilities and the Commemoration of the March on Washington

A release from the American Association of People with Disabilities:

The Chair of the American Association of People with Disabilities (AAPD), Fred Maahs, will speak at the Closing Commemoration of the 50th Anniversary March on Washington on Wednesday, August 28, 2013. Maahs is scheduled to speak prior to President Barack Obama who takes the podium at 3PM EST, which is the exact time that Reverend Dr. Martin Luther King Jr. delivered his I Have a Dream speech.

“For many millions of people with disabilities, the American dream remains out of reach,” said Fred Maahs, Chair of AAPD. “We have seen a lot of progress, but, like all civil rights movements, the disability rights movement has much more to do.”

Maahs is referring to staggering challenges in employment, healthcare, technology and education. According to the Bureau of Labor Statistics, the unemployment rate for Americans with disabilities is nearly double the rate compared to Americans without disabilities (14.7% v. 7.4% as of July, 2013). Further, 8 out of 10 Americans with disabilities are out of the workforce. Today in the United States, hundreds of thousands of people with disabilities earn far less than minimum wage in segregated work. Finally, 85 percent of young people with disabilities report incidents of bullying.

In addition, Maahs will call on Americans to support the ratification of the Convention on the Rights of Persons with Disabilities (CRPD) or Disability Treaty. The Disability Treaty is in the spirit of the Americans with Disabilities Act (ADA), historic bipartisan legislation passed in 1990 that advanced and recognized the rights of Americans with disabilities. The Disability Treaty would level the playing field for U.S. businesses working abroad and increase access for U.S. citizens with disabilities when traveling overseas.

“Our disability rights movement is a civil rights movement grounded in the very American principles of freedom and self-determination,” said Mark Perriello, the President and CEO of AAPD. “Like more and more Americans, Maahs knows that disability rights are civil rights and everyone at AAPD is proud that he is participating in the Closing Commemoration.”

Maahs is the current Director, National Community Partnerships at Comcast, and Vice President of the Comcast Foundation. AAPD and Comcast partnered to broadcast the first-ever national anti-bullying public service announcement for people with disabilities.
For more information, please go to www.AAPD.com/march. 

Workplace Metrics

A release from the US Department of Labor:

The U.S. Department of Labor today announced two final rules to improve hiring and employment of veterans and for people with disabilities. One rule updates requirements under the Vietnam Era Veterans’ Readjustment Assistance Act of 1974; the other updates those under Section 503 of the Rehabilitation Act of 1973. For more than 40 years these laws have required federal contractors and subcontractors to affirmatively recruit, hire, train and promote qualified veterans and people with disabilities respectively.
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"Strengthening these regulations is an important step toward reducing barriers to real opportunities for veterans and individuals with disabilities," said Patricia A. Shiu, director of the department’s Office of Federal Contract Compliance Programs, which enforces both laws.
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The Section 503 rule introduces a hiring goal for federal contractors and subcontractors that 7 percent of each job group in their workforce be qualified individuals with disabilities. The rule also details specific actions contractors must take in the areas of recruitment, training, record keeping and policy dissemination — similar to those that have long been required to promote workplace equality for women and minorities. [emphasis added]

The rules will become effective 180 days after their publication in the Federal Register. More information is available atwww.dol.gov/ofccp/VEVRAARule/ and www.dol.gov/ofccp/503Rule/.

OFCCP enforces Executive Order 11246, Section 503 of the Rehabilitation Act of 1973 and the Vietnam Era Veterans' Readjustment Assistance Act of 1974. These three laws require those who do business with the federal government, both contractors and subcontractors, to follow the fair and reasonable standard that they not discriminate in employment on the basis of sex, race, color, religion, national origin, disability or status as a protected veteran. For general information, call OFCCP's toll-free helpline at 800-397-6251 or visit http://www.dol.gov/ofccp/.

Housing Discrimination

Autism Speaks reports that a federal appeals court has upheld a HUD case against a West Virginia landlord.

The case involved a Charleston, WV landlord who imposed a series of conditions on a prospective tenant, Delores Walker, after she said her 48-year-old brother with "severe autism" would share the apartment. The landlord demanded that Walker obtain a note from her brother's doctor stating that he would not pose a liability threat, obtain a renter’s insurance policy with $1 million in liability coverage, and assume responsibility for any damage Walker's brother might cause to the property.

The landlord, Michael Corey, told Walker he was imposing the conditions based on his prior observations of “children with autism . . . flailing their arms and hollering and screaming in outrage.”

Walker elected not to pursue the rental, but HUD took up the case, arguing Corey had violated the Fair Housing Act by discriminating on the basis of disability in his offer of the apartment. An administrative law judge found for Corey, but HUD reversed the judge's recommendations and imposed fines on Corey.

Corey then appealed to the U.S. Fourth Circuit Court of Appeals. The three-judge federal appeals panel upheld HUD's actions and further increased the fines.

From the opinion: 

Section 3604(c) of the FHA [Fair Housing Act] prohibits oral or written statements with respect to the rental of a dwelling that indicate a “preference, limitation, or discrimination” based on certain protected statuses, including disability....

Corey does not deny telling Ms. Walker that he intended to impose special conditions on the Walkers’ prospective tenancy, but disagrees that he violated § 3604(c). He argues that he imposed the conditions only after Ms. Walker’s “voluntary and unsolicited statement that her brother suffers from ‘severe autism and mental retardation.’” Pet’r’s Br. 20. Corey also notes that he never indicated a flat refusal to rent to the Walkers, “only that . . . risk insurance maybe [sic] required.” Id. at 21.

Corey’s arguments are unavailing. For one, the fact that Ms. Walker disclosed her brother’s disability does not excuse Corey’s discriminatory responsive statements. Nor does it matter that Corey did not refuse to rent to the Walkers; the statute simply prohibits statements to renters that indicate a limitation based on disability, and Corey admits to making such statements. This ends the inquiry, as substantial evidence supports the Secretary’s determination.

...
 Finally, we affirm the Secretary’s conclusion that the § 3604(f)(9) “direct threat” exception does not apply. Corey makes no showing that his discriminatory conduct was supported by any objective evidence that Mr. Walker posed a direct threat to persons or property, as is required to trigger the exception. See H.R. Rep. No. 711, at 30 (1988), reprinted in 1988 U.S.C.C.A.N. 2173, 2191. And even if Corey’s request for a meeting with Mr. Walker and a doctor’s note was, as he maintains, an attempt to obtain such objective evidence, Corey cannot justify the other discriminatory conditions he sought to impose, based as they were on unsubstantiated stereotypes about autistic people in general.

A Service Dog, An Allergy, and the Media

In Ohio, The Columbus Dispatch reports on Shyanna Gretz, a 6-year-old autistic girl who cannot attend Morrison-Gordon Elementary School with her service dog. The special-ed teacher who was to teach Shyanna is severely allergic to dog dander.

Instead, Gretz was told, her daughter and the dog must transfer to East Elementary School, where an allergy-free special-education teacher will instruct Shyanna using the customized learning plan developed for the girl.

That’s unacceptable to [mother Charla] Gretz, who asked why a different teacher could not be assigned rather than make her daughter change schools. Morrison-Gordon is a 15- to 20-minute bus ride for her daughter, and riding to East would double the time, she said.

“She does not do well with buses,” Gretz said.

Shyanna’s autism includes being overwhelmed by sensory issues and not coping well with change, and a longer bus ride and switching schools would exacerbate both, she said.

Superintendent Carl D. Martin said Spring is welcome in the district of about 2,800 students, where about 20 percent have an identified disability, he said.

However, the accommodations made for Shyanna and her dog must be balanced against the rights of the allergic teacher, and moving the student to a different school is a reasonable solution, Martin said.

He also disputed the time that Gretz gave for the bus ride. The elementary schools are 5 miles apart, and Shyanna would not spend significantly more time on the bus, he said.

Spring is trained to calm Shyanna and to walk on a tether attached to Shyanna so the girl cannot wander.

In Ohio, The Athens News reports:

After the Columbus Dispatch ran a story about the dispute Friday, Martin said, he was deluged with media calls. "I've talked to the Dispatch, WOUB (radio), Channel 4 news (from Columbus), the Athens Messenger," he ticked off. "I've talked to MSN.com." He added that one person he hasn't yet had a discussion with is Charla Gretz.

TV Story on Wandering

Many posts have discussed wandering by ASD children and adults.  WKBN in Youngstown reports on  children and elopement:

An Impending Crisis

WebMD reports on autistic adults:

"This is an impending health care or community care crisis," said Dr. Joseph Cubells, director of medical and adult services at the Emory Autism Center at Emory University in Atlanta. "The services that are available vary from state to state, but often the resources just aren't there."
...
"We say autism as if it's a single thing, much like we say cancer," Cubells said. "But, within the general category of things we call cancer are brain tumors, lung tumors, pancreatic tumors, and each requires different treatments. Autism is very individual. It varies from one extreme where someone needs custodial care for their entire life to the other extreme where someone is a highly functional, successful person who may be regarded as being a little quirky," he explained.

"There are some common themes," Cubells said, "but there's really nothing that applies to every single person."

Take higher education, for instance. An older child who's on the higher-functioning end of the spectrum may be able to go to college, but that presents challenges as well.

"There's often a substantial mismatch between verbal skills and performance skills," Cubells said. "You can be highly intelligent and able to do complex math and abstract reasoning, but you don't know how to ask someone out for coffee. Having to make friends, schedule meals, and get to class without help can be like hitting a brick wall for a lot of people on the spectrum.

I often tell people with Asperger's that they have to learn in words what most people learn intuitively."

He said a college's disability services office could be helpful in some cases, as could peer mentorship programs that pair someone with Asperger syndrome, for instance, with someone of the same age who's learned about the condition.

FDA on Hyperbaric Oxygen Treatment

Some people have tried to use hyperbaric oxygen chambers to treat autism, even though evidence is lacking. An open letter from the Food and Drug Administration:

Over the last year, the FDA has become increasingly aware of hyperbaric oxygen treatment centers promoting hyperbaric oxygen chambers for uses that have not been cleared or approved by the FDA. Even though the FDA does not regulate the practice of medicine, we are concerned that patients may be choosing hyperbaric oxygen therapy (HBOT) over proven medical treatments without realizing that the FDA has only cleared HBOT devices for 13 specific indications, as outlined at the end of this e-mail. The FDA does not have any data supporting the safe and effective use of HBOT for treatment of any indications not included in this list.

The FDA urges patients to discuss this therapy directly with their health care providers to determine if it is an appropriate treatment option. To provide more information, the FDA has published an FDA Consumer Update: Hyperbaric Oxygen Therapy: Don’t Be Misled. We encourage you to share this article with your members. Additionally, if any of your members suspect they have been injured through use of hyperbaric oxygen chambers, we encourage them to submit a report through MedWatch, FDA’s Safety Information and Adverse Event Reporting program.

If you have any questions about this communication, please contact FDA’s Division of Small Manufacturers, International and Consumer Assistance (DSMICA) at DSMICA@FDA.HHS.GOV, or 800-638-2041, or 301-796-7100.

Thank you for your continued support.

Autism is not on the list of 13 indications.

More Risk Factors

Most scientific studies are careful to distinguish correlation and causation, but a casual reader of the news might scan recent stories and conclude that "everything causes autism."

From Time:

More research finds a family-based risk of autism among siblings, which raises the question of what parents can do to lower the risk among potentially at-risk youngsters.

Researchers from Aarhus University in Denmark report in the journal JAMA Pediatrics that children with an older brother or sister diagnosed with an autism spectrum disorder (ASD) are more likely to be on the spectrum themselves.

According to their study of about 1.5 million children born in Denmark between 1980 and 2004, those who had an older sibling diagnosed with autism had close to a seven-fold increased risk of developing autism as well. Siblings who shared the same mother and father had a 7.5 greater risk of having autism, whereas maternal half siblings had a 2.4 greater risk. Paternal half siblings didn’t have a statistically significant increase in risk.

From Healthline:

Expectant mothers should be tested for thyroid issues to reduce their child’s risk of developing autism and other complications, experts say.

New research published in the Annals of Neurology shows that mothers with low levels of the thyroid hormone T4, or throxine, are four times more likely to give birth to a child with autism. The more throxine deficient a mother is, the more pronounced her child’s symptoms can be, researchers said.

Scientists from the Houston Methodist Neurological Institute and Erasmus Medical Centre came to this conclusion after studying 4,000 Dutch mothers and their children. This finding coincides with previous research that shows a mother’s throxine levels influence a child’s neurological development.

“It is increasingly apparent to us that autism is caused by environmental factors in most cases, not by genetics,” lead author Dr. Gustavo Román, a neurologist and neuroepidemiologist who directs the Nantz National Alzheimer Center, said in a press release. “That gives me hope that prevention is possible.”

HealthDayNews reports:

Inducing or helping along labor in pregnant women may raise the risk for having a child with autism, particularly if that child is a boy, a new study suggests.

Experts, including the Duke University researchers, are quick to caution that there are often overriding medical reasons to induce or augment labor that should not be ignored because of any potential risk of autism.

Inducing labor involves stimulating contractions before labor has started through various means, and augmenting labor refers to the practice of helping labor progress more quickly with oxytocin (Pitocin), a drug that stimulates contractions.

... 

The new study, published online Aug. 12 in JAMA Pediatrics, is the largest to date that looks at autism risk and factors affecting labor and delivery. The findings don't prove that labor induction or augmentation cause autism, they just show an association. Exactly how labor induction could affect autism risk is unknown, but the drug oxytocin may play a role.

CBS reports: 

Other conditions during pregnancy have recently been linked to increased autism risk. An August 2012 study showed that mothers who were obese were 67 percent more likely to have children with the disorder compared to those who maintained a normal weight during pregnancy.

Taking the anti-epilepsy drug valproate has been linked to a five-fold higher risk of having a child with an autism spectrum disorder in an April 2013 study published in JAMA. Exposure to air pollution while with child was also significantly connected to higher rates of autism, a June 2013 Environmental Health Perspectives study revealed.

Bullying, FAPE, and the Department of Education

Disability Scoop reports:

In new guidance sent to educators across the country, federal education officials say that schools may be liable if they don’t properly address bullying of students with disabilities.

The guidance issued Tuesday in a four-page “Dear Colleague” letter details the unique obligations that schools have under the Individuals with Disabilities Education Act to ensure that children with disabilities are not victimized.

Specifically, officials from the U.S. Department of Education’s Office of Special Education and Rehabilitative Services said that bullying can lead to a denial of a student’s right to a free and appropriate public education, or FAPE, if it “results in the student not receiving meaningful educational benefit.

...

Several studies in recent years have suggested that children with disabilities more frequently encounter bullying. Findings released in 2012 from a nationwide poll indicated that 63 percent of kids with autism have been bullied. Another study published the same year found that about half of adolescents with autism, intellectual disability, speech impairments and learning disabilities were bullied at school..

Education Week reports:

The letter points to research on bullying and students with disabilities, including a 2012 paper in the Journal of School Psychology which found that students with observable disabilities and behavior disabilities reported being bullied more often than their typically-developing peers.

The department also cited a 2010 study in the Journal of Developmental Behavioral Pediatrics that surveyed 221 youth with varying disabilities and compared their experiences to 73 typically developing children. In addition to being at higher risk of bullying, that study noted that students with disabilities were also at risk of being ostracized from their peers.

To that point, the guidance letter also says that schools cannot unilaterally decide to try to fix a bullying problem by moving a student with disabilities to a more-restrictive "protective" environment, or by changing a student's special education services. That decision must be made by an IEP team and give an opportunity for parents to weigh in, the letter said.

Ari Ne'eman, the president of the Autistic Self Advocacy Network, supported that reminder. In a statement, he said that the department deserves credit "for reinforcing that when a child is being bullied, it is inappropriate to 'blame the victim' and remove them from the general education classroom. School districts have an obligation to address the source of the problem—the stigma and prejudice that drives bullying behavior."

Update: Fixing an Affordable Care Act Problem

An earlier post discussed a problem with the Affordable Care Act.  The Oregonian reports on a potential fix:

Federal officials have reversed course on a new provision of the Affordable Care Act that would have largely barred guardians from serving as paid caregivers for adult children with developmental disabilities.

Officials with the state Department of Human Services said Friday that federal officials have agreed to work with the state to develop "the right processes" to allow guardians -- often times relatives -- to continue as paid caregivers. It's unclear yet what those processes will be, said Patrice Botsford, director of developmental disabilities services for the department.

"We'll be working on it next week," she said. "We will do it as rapidly as we possibly can."

The news comes as a relief to parents such as Deana Copeland, who feared the provision could have forced her to place her 22-year-old daughter in foster care. Her daughter, Andrea Hood, suffers from cerebral palsy, spina bifida and autonomic dysreflexia, a potentially life-threatening condition, and requires around-the-clock care. The pair was featured in a story by The Oregonian earlier this week.

Screening Latino Children

A release from Oregon Health & Science University:

Clinicians have long known that early identification of an autism spectrum disorder (ASD) improves a child’s long-term health outcome as well as the family’s ability to cope with disease. But Latino children are diagnosed with ASDs less often and later — an average of 2.5 years later — than white children and have more severe symptoms at the time of diagnosis. The reasons behind these disparities have been poorly understood, and no studies have investigated pediatricians’ perspectives on this inequity — until now.

A new study published online in the journal Pediatrics reveals that multiple factors in the primary care setting may contribute to delayed autism spectrum diagnosis for Latinos, including the perception that Latino parents are less knowledgeable about ASDs than white parents.

The study’s lead investigator, Katherine E. Zuckerman, M.D., M.P.H., an assistant professor of pediatrics at Doernbecher Children’s Hospital, Oregon Health & Science University, surmised that given their regular and early contact with families, primary care pediatricians play a critical role in early ASD identification. To test her theory, Zuckerman and colleagues surveyed 297 California primary care pediatricians — California is home to the highest population of Latino children in the United Sates — and their results were surprising:

• Only 1 in 10 pediatricians surveyed was performing the recommended (American Academy of Pediatrics) developmental screenings in Spanish.
• The majority of pediatricians reported that identifying ASD risk in Spanish-speaking families was difficult.
• 3 in 4 of the pediatricians cited access, communication or cultural barriers as obstacles to early identification of ASDs.
• The most common barrier, according to the surveyed pediatricians, was a lack of access to ASD specialists.

Zuckerman and colleagues concluded that promoting language-appropriate screening, distributing culturally appropriate materials to Latino families, improving the availability of specialists, and providing physicians with support in screening and referral for Latino children could help improve early diagnosis for Latino children.

Note that most screening and diagnostic tools are proprietary, so there is a fee for using them.

Cyrstal Phend writes at MedPage Today:

Overall, 81% offered some kind of developmental screening at any routine visit for their patients. But only 30% did the general screening and 43% did autism spectrum disorder screening on the American Academy of Pediatrics-recommended schedule.

Doing both types of screening in Spanish following the guidelines was reported by only 10%.
The survey did not attempt to determine why so many providers didn't offer Spanish-language screening, but 25% of them cited limited availability of screening tools as a barrier to autism spectrum disorder diagnosis in Latino children.

"Although the Modified Checklist for Autism in Toddlers is publicly available in Spanish, most recommended developmental screening tools are not publicly available, and Spanish materials cost more," Zuckerman's group pointed out.

"Developing and promoting free or low-cost screening resources could improve early identification and reduce language-based disparities," they suggested.

A Parent's View of IEPs

At The Daily News Journal in Murfreesboro, Tennessee, Nancy De Gennaro reports:

For children with special needs, including autism, an individualized education plan meeting should be set up explains Jennifer Kates, whose son, Harper, has autism.

“That’s just the plan every special education student has. It’s an individual plan for how that child needs to be educated,” she says. Kates suggests contacting the school’s special education teacher and assistant principal to set up the IEP.

When she first approached the school system regarding Harper’s autism diagnosis, she was armed with information and lots of paperwork, including a copy of the official diagnosis.

She attended orientation for Tennessee’s Support and Training for Exceptional Parents program (tnstep.org), which “basically educates parents of children with special needs.”

“If you’ve never been through the system and don’t know how laws work, you can get eaten alive,” says Kates, an English professor at Middle Tennessee State University. “You just have to know what your rights are, what you can ask for, and it’s your job to advocate. Sometimes people feel like you’re being rude. But really, educators and administrators don’t often know what your kids need… And every single child is different.”
...
Kates urges parents to visit autismspeaks.org and download the 100-day kit, which guides parents in the early stages of diagnosis. The kit includes a section on IEPs, too

Texas School District Bans GPS Device

KTVT-TV in Dallas reports:

An Arlington family says the school district will not allow a six-year-old with autism to take a life-saving device to school. The battle began back in February. The CBS 11 I-Team got involved this week. The little girl heads back to school in one week. A national autism organization and a local lawmaker are also involved.

Coral loves to paint, play, and learn like most six-year-olds.   She also likes to wander like most children with autism.

“When Coral is outside she runs,” says her grandmother Carol Christian.

Coral rode the bus to Pope Elementary last year and her grandmother worried that she would wander from school.  So, the family bought her a GPS tracking device.

“The tracker simply tracks where Coral is at every five minutes throughout the day.”

Christian says the tracker alerts the family if Coral goes outside of a specific zone.  The remote stayed in coral’s backpack until March.

“All of a sudden we get an email at home telling us they had removed the GPS tracker from her backpack…that it was against district policy,” explained Christian.

Habilitative Services

Kaiser Health News reports:

Habilitative services are for people who can benefit from one-on-one time with a therapist to improve daily living skills. But such services can be expensive, and not all insurance plans have covered them.

The Affordable Care Act is changing that, says health economist Lisa Clemans-Cope with the Urban Institute.

"You're much more likely to find these benefits in a plan in the individual market [starting in 2014] than you would be today. Far more likely," says Clemans-Cope.

This is because "habilitative services" are included within the 10 categories of essential health benefits the ACA will require in those new plans. Still, while some categories are straightforward — such as maternity care and preventive care — the category including habilitative services leaves more room for interpretation.

For instance, insurers could choose to cover physical therapy for someone with a broken bone, but not cover long-term support services for chronic conditions, such as speech therapy for kids with developmental delays

Special Ed in California

Tom Chorneau writes at SI&A Cabinet Report on a California group organizing plans to overhaul how special education.

Led by Linda Darling-Hammond, a nationally-recognized education professor from Stanford and chair of the CTC, the group has solicited foundation seed money to hire an executive director and partnered with the San Mateo County Office of Education to provide administrative support.

Darling-Hammond, said in an interview that the crisis has been building for some time, caused, at least in part, by a decision in the late 1990s to relax requirements to deal with a teaching shortage.

“In order to deal with the shortage, the CTC reduced the training – eliminating the requirement that teachers have a basic teaching credential before they learn to teach special education,” she explained. “So many of our special education teachers are not qualified to teach regular education, nor do they have a deep grounding in teaching itself.”
...
California schools serve about 690,000 students with disabilities – about 10 percent of total enrollment and up from 612,000 only 10 years ago. Including federal, state and local contributions, the state’s special education costs totaled about $8.6 billion in 2010-11, according to the non-partisan Legislative Analyst.

According to a 2012 report from the American Institutes for Research, California had one of the lowest identification rates of students with disabilities in the nation in 2009-12 at 6.7 percent– well below the national average of 7.9 percent.

Meanwhile, the state’s students with disabilities ranked 48th in the nation based on 2011 math and reading assessments.

From the AIR study:

Wandering and Autism

AP reports:

[A]t least 14 children with autism known to have died this year after slipping away from their caregivers. All but one of them drowned, evidence of a fascination that many autistic children have with water. The body of the latest victim, 11-year-old Anthony Kuznia, was found Thursday in the Red River after a 24-hour search near his home in East Grand Forks, Minn.

...

Wandering has led to the deaths of more than 60 children in the past four years, and the fear of it can make daily life a harrowing, never-let-your-guard-down challenge for parents.

...
The study in Pediatrics found that half of parents with autistic children had never received advice or guidance from a professional on how to cope with wandering.

...

[Bob Lowery, executive director of the missing children division of the National Center for Missing and Exploited Children], as well as many advocates for autism-affected families, have been exploring ways of developing a national alert system tailored to deal with wandering incidents. He said the existing Amber Alert system is not an option — it's limited to cases where a child is believed to have been abducted by someone who poses a danger to them.

One option being looked at is Project Lifesaver, launched in 1998 to help search-and-rescue teams find missing people with Alzheimer's disease, dementia, autism and Down syndrome. Funding is an issue, however: For the program to function, the people at risk of wandering must wear transmitter bracelets and emergency services must have appropriate tracking equipment.

The driving force behind the recently published research on wandering was the Interactive Autism Network, a program headed by Dr. Paul Law at the Kennedy Krieger Institute in Baltimore.

In Eugene, Oregon, KVAL reports:

Another Problem with the Affordable Care Act

Previous posts have discussed implementation problems with the Affordable Care Act. The Oregonian reports on a single mom who may have to put her severely disabled daughter -- for whom she serves as paid caregiver -- into foster care.

That's because a new provision of the Affordable Care Act set to go into effect Jan. 1, 2014, would largely prohibit guardians from serving as the paid caregiver of an adult child with developmental disabilities. Disability rights advocates and state officials are fighting the provision and say it could restrict family flexibility and choice, especially for single parents who serve as guardians and use the caregiving allowance to stay at home.

Hood's individual service plan allows only her parents or nurses to care for her, meaning that taxpayers would likely foot additional costs should she move to foster care and require 24-hour care from nurses.

The new federal provision aims to resolve a conflict of interest that arises when the guardian who helps develop an individual service plan hires herself or himself as the paid caregiver, which could lead to financial fraud. Oregon has allowed guardians to be paid caregivers for more than 10 years under various federal waivers, and a state official says she can't recall a case where that arrangement was problematic.

The new provision is part of the K Plan, a Medicaid state plan option under the Affordable Care Act. Oregon is the first state in the nation to implement the plan, which emphasizes home- and community-based services.

But the provision will likely cause hardships for the 455 Oregon families where the guardian and the caregiver are the same person. Some families might need to go through a pricey and time-consuming process to transfer guardianship.

Kaiser Settlement in California

Autism Speaks reports:

California families denied coverage by Kaiser Permanente for applied behavior analysis (ABA) and speech therapy for their children with autism between 2004 and 2012 can apply for up to $9.3 million reimbursement for their out-of-pocket expenses and debts, under a class action lawsuit settlement.

Kaiser agreed to set up the fund to settle the lawsuit, which was brought in state Superior Court on behalf of Andrew Arce of Los Angeles who was 2 years old when Kaiser denied claims for his ABA treatment. The settlement covers out-of-pocket expenses and debts incurred between April 8, 2004 and June 30, 2012 for children diagnosed with autism.

The lawsuit alleged that Kaiser improperly denied coverage for ABA and speech therapy for children with autism under the terms of its contracts and the California Mental Health Parity Act. The class action is one of several filed around the nation charging health plans with violating state mental health parity laws by denying claims on the basis of an autism diagnosis.

An explanation of the settlement is here

A copy of the claim form is here

Bad Reporting in The New York Times

A number of posts have discussed autism and the news media. At Forbes, Emily Willingham knocks down a shoddy story in The New York Times:

Perhaps you saw the headline. God knows, it was eye catching enough: “Autism’s Unexpected Link to Cancer Gene.”

That headline and the utterly confusing story that follows it both fail to emphasize two very important clarifications: First, the gene in question isn’t just a “cancer gene.” It’s a gene that regulates the cell cycle, and changes in these genes can and do have effects that aren’t confined to cancer. Calling it a “cancer” gene in this context is inflammatory, at best.

Second, and more important, the autism in question, according to all of the research involving this gene and other similar genes, is part of a syndrome of traits that includes a head circumference that is either significantly small (microcephaly) or significantly larger (macrocephaly) than typical. It comes with clinical signs other than autism, and that’s important, particularly for parents looking at their children after reading this article and thinking, “Cancer?”

She predicts that the article will have two effects:

It will conflate autism and cancer yet again in people’s minds and lead parents of autistic children to worry that now, they must also angst about a predisposition to cancer, and it will anger autistic advocates and those who care about them because of its careless comparison of autism and a fatal disease. Autistic people and their families deserve more care than this, and readers of the New York Times deserve careful, accurate science writing placed in an appropriate context.

Brain Differences

New research suggests that autism may be different in men and women, and that autism may be different from Asperger's.

The Los Angeles Times reports [h/t JM]:

Do women who are on the autism spectrum have brains that are more “masculine”?

A team of researchers at Cambridge University's Autism Research Center has found striking similarities between the structural anomalies found in the brains of women with autism spectrum disorder and neurobiological characteristics known to be different between males and females in general.

The results, published online Thursday in the review Brain, partially confirm aspects of an “extreme male brain” theory of autism put forth by Cambridge neuroscientist Simon Baron-Cohen and his colleagues. But other results of the study appeared to shake the theory -- scans of the brains of men with autism didn’t exhibit a discernible “extreme” of masculine architecture.

At the least, the study adds significant evidence that there are fundamental differences between the brains of women with autism and those of their male counterparts, and highlights the need to include more women in studies. Although males are disproportionately represented in the population of autistics by a ratio of 2:1 or 3:1, the gender disparity in research samples hovers closer to 8:1, according to the study authors.

The Huffington Post reports on an EEG study showing Asperger kids have brain connectivity patterns different from those of autistic kids.

"We looked at a group of 26 children with Asperger's, to see whether measures of brain connectivity would indicate they're part of autism group, or they stood separately," said study researcher Dr. Frank Duffy, a neurologist at Boston's Children Hospital. The study also included more than 400 children with autism, and about 550 typically-developing children, who served as controls.

At first, the test showed that children with Asperger's and those with autism were similar: both showed weaker connections, compared with typically-developing children, in a region of the brain's left hemisphere called the arcuate fasciculus, which is involved in language.

However, when looking at connectivity between other parts of the brain, the researchers saw differences. Connections between several regions in the left hemisphere were stronger in children with Asperger's than in both children with autism and typically-developing children.
The results suggest the conditions are related, but there are physiological differences in brain connectivity that distinguish children with Asperger's from those with autism, according to the study published Wednesday (July 31) in the journal BMC Medicine.

Q&A: Autism and the Affordable Care Act

At Stateline, Christine Vestal offers some q&a on autism and the Affordable Care Act:

Will existing state insurance mandates apply to policies sold on the state insurance exchanges?

Maybe.

The ACA says state insurance mandates in place before Dec. 31, 2011 may apply to policies offered on the exchanges. If a state requires commercial carriers to cover ABA, that same requirement may be applied to policies sold on its exchange.

However, when the administration directed states to define “essential benefits,” every state either chose a “benchmark plan” (defined as the small business plan in the state with the most beneficiaries) or let the federal government choose a similar plan for them. If a state’s benchmark plan includes a requirement to cover ABA and other autism treatments, then all the plans on its exchange must do the same.

But in 11 of the 34 states with autism mandates, the benchmark plan does not include autism coverage, according to an analysis by advocates Autism Speaks. In those states, as well as the 16 states without autism mandates, state officials have the option of adding autism coverage as a required “supplemental” plan.

In Ohio, where the legislature is currently considering an autism bill, Gov. John Kasich, a Republican, mandated autism coverage by executive order in December 2012. Alaska’s insurance chief, Bret Kolb, wrote to state lawmakers last month confirming that Alaska’s newly-minted autism mandate would apply to policies sold on the federally-run exchange.

How do state mental health parity laws affect autism patients?

According to the National Conference of State Legislatures, every state but Wyoming now has a mental health parity law on the books, requiring that when insurers cover mental illness and/or substance abuse they do so on an equal financial basis with physical illnesses. A federal law – the Mental Health Parity and Addiction Act of 2008 – also requires equal treatment, but the Obama administration has yet to complete the federal rules that would enable states to enforce it.

Parity laws only require carriers to pay as much for mental health treatments as they pay for medical treatments, with the same co-pays, deductibles and coverage limitations. The laws do not require carriers to cover specific treatments, such as ABA treatments. Still, state parity laws, combined with mandates, will maximize coverage for any given child.

Autism, Kansas, and the Affordable Care Act

Kansas does not have an insurance mandate.  The Kansas City Star reports on an insurance industry argument against it:  The Affordable Care Act.

In Kansas, insurance companies have been urging lawmakers to ease up on any new mandates until it’s clear how the new Affordable Care Act will affect premiums.

“It’s not the best time to be looking at new requirements for health insurers,” said Mary Beth Chambers, spokeswoman for Blue Cross and Blue Shield of Kansas.

But some Kansas lawmakers, including conservatives who generally oppose government mandates, want to push forward.

They argue the state will save money in the long term by treating kids now and getting them on their way to an independent life.

“It is the fiscally and morally conservative and responsible thing to do for Kansas kids with autism and their families,” said Rep. John Rubin, a Shawnee Republican.

However, Kansas insurance regulators have warned lawmakers that the state might have to pick up the cost of any new mandate that would be a part of basic insurance plans sold under the Affordable Care Act.

Governors, Employment, and Disability

Many posts have dealt with employment of people with autism and other disabilities. Delaware Governor Jack Markell, outgoing chair of the National Governors Association talks with Judy Woodruff (the mother of a person with spina bifida) about a report titled A Better Bottom Line: Employing People with Disabilities.

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From the report:

Private and nonprofit providers train and assess talented individuals, including people with disabilities. Some firms serve people with disabilities exclusively. For example, Manpower Group launched a national program called Project Ability to transition people with disabilities into sustainable employment with leading employers nationwide.36 A company called Specialisterne is setting up in the United States to enable 1 million jobs for people with autism and similar challenges through social entrepreneurship, corporate-sector engagement, and a global change in mindset.37

 36 “Manpower, “Manpower Launches Project Ability to Find Employment for People with Disabilities,” Press Release, June 15, 2010,http://press.manpower.com/press/2010/project-ability.

37 Specialist People Foundation, http://specialistpeople.com.

A Promising Employment Study

Most of the news on employment of ASD people has been bleak.  In The Journal of Autism and Developmental Disorders, Paul H. Wehman and colleagues offer a rare bright spot.  The abstract:

For most youth with autism spectrum disorders (ASD), employment upon graduation from high school or college is elusive. Employment rates are reported in many studies to be very low despite many years of intensive special education services. This paper presented the preliminary results of a randomized clinical trial of Project SEARCH plus ASD Supports on the employment outcomes for youth with ASD between the ages of 18–21 years of age. This model provides very promising results in that the employment outcomes for youth in the treatment group were much higher in non-traditional jobs with higher than minimum wage incomes than for youth in the control condition. Specifically, 21 out of 24 (87.5 %) treatment group participants acquired employment while 1 of 16 (6.25 %) of control group participants acquired employment.

A Bad Autism Charity

A number of posts have discussed autism charities.  Most do fine work, but some are not on the level. The Tampa Bay Times reports:

Autism Spectrum Disorder Foundation is one of the worst charities in America when it comes to spending large amounts of cash on for-profit solicitation companies.

But that fact has been obscured in documents filed with state regulators.

The Times and CIR took a closer look at the charity after readers suggested we investigate.

IRS tax documents show that from 2009 to 2011, the charity raised $7.6 million through its solicitors. More than 90 percent of that was paid directly to for-profit solicitation companies hired by the charity.

Its history of using high-cost fundraisers for most of its income would be enough to make Autism Spectrum one of the nation's worst charities. The Times/CIR rankings are based on the amount of money charities spend on fundraisers. But because state reports filed by one of the charity's solicitors understated Autism Spectrum's fundraising cost, it did not make the list.

The charity was founded in 2007 and is run by Michael Slutsky. The organization's mission is to educate the public about autism and provide financial assistance and educational material to help detect and treat the disease.

It provides scholarships for autistic children to attend camp, sends holiday gift cards and gives 'Early Detection Kits' to agencies that work with young children, according to its website.

But of the $7.6 million raised by solicitors, less than 3 percent has been spent on direct cash aid, tax records show.

Data on Age of Diagnosis

At Left Brain/Right Right, Matt Carey writes:

Autism is supposed to present before age 3. One might then think that most autistics would be diagnosed by age three, but this is not the case. The average age of diagnosis is above age three. Consider the recent National Survey of Children’s Health. This survey was the basis for the recent autism prevalence estimate of 1 in 50 in the U.S.. When were these kids diagnosed?

... Most kids were diagnosed after age 3. Many after age 5. A significant minority after age 10.

One would hope that parents, pediatricians, family members, day care workers, pre school staff and more would raise flags before kids enter school. But not all kids go to day care or preschool. One would hope that when kids get to kindergarten they might be referred for evaluations if they show signs of autism. One might think that a school nurse or a school psychologist would test a kid and inform parents of the possibility of autism. But that doesn’t seem to happen. Out of over 2000 autistic kids in the survey, only 130 were identified by a school psychologist.

Perhaps in some cases parents are being referred to an outside psychologist for diagnosis. But there isn’t strong evidence in the age distribution that a lot of kids are being diagnosed at ages 5 and 6, when they enter school. Don’t get me wrong, teachers and school staff do a lot. But they have a lot to do and autistic kids in regular and special education are not getting identified as early as could happen.

It can be done. Yvette Janvier demonstrated this in underserved communities, but the need is there in all communities.

“Study Finds Early Childhood Educators Can Effectively Screen Students For Autism In Underserved Communities

FDA Defines "Gluten-Free"

The Los Angeles Times reports:

With one-third of Americans trying to avoid the protein, the "gluten free" label holds increasing cachet. On Friday, the federal government issued an official definition of that claim, bringing a measure of uniformity to a burgeoning industry.

According to the Food and Drug Administration, a food or other substance can be labeled "gluten free," "no gluten," "without gluten" or "free of gluten" if contains less than 20 parts per million of it. Manufacturers have until Aug. 5, 2014, to comply with the new definition.

...
Some parents believe their children's autism symptoms improved when they stopped eating gluten and casein (a protein found in milk products), though there's no scientific evidence to support their observations.

See the FDA release. 

Bill Proposes a Study of Vaccines

At the House Oversight hearing last year, Representatives Bill Posey (R-Florida) and Carolyn Maloney (D-NY) took the anti-vaccine side. At Left Brain/Right Brain, Matt Carey writes about HR. 1757 by Posey and  Maloney, which seeks a comparative study of vaccinated and unvaccinated populations.

“(11) There are numerous United States populations in which a practice of no vaccination is followed and which therefore provide a natural comparison group for comparing total health outcomes.”

If you think one of the “numerous” populations considered are the Amish, you’d be correct. They are mentioned later in the bill. They’ve been mentioned in previous versions of the bill. Even though the Amish do, indeed, vaccinate. There was some very poor journalism promoting the idea that the Amish don’t vaccinate (and that their are no autistic Amish, another incorrect statement).

The bill then goes on the instruct the Secretary of Health and Human Services to initiate a study of health outcomes in vaccinated and unvaccinated populations.

... 

(d) Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish, members of clinical practices (such as the Homefirst practice in Chicago) who choose alternative medical practices, practitioners of anthroposophic lifestyles, and others who have chosen not to be vaccinated.

Why would the named groups be any more valuable to researchers than “…others who have chosen not to be vaccinated”?

It’s a useless clause. It’s worse than useless. One would want to study populations as similar in all respects save vaccination as possible. In their press release SafeMinds stated, ” Every 7th grader knows you cannot do a proper experiment without a rigorous control group that can be compared with the exposed group.” Choosing a group which is specifically different from the study group in areas other than the variable of interest would be, by definition, non rigorous. I’ll leave it to the reader whether every 7th grader would understand that, as some well educated adults do not.

...

The bill is essentially the same as the previous incarnations. The “transparancy” clause is new. Also new is this:

(b) Rule of Construction- Nothing in this Act shall be construed to authorize the conduct or support of any study in which an individual or population is encouraged or incentivized to remain unvaccinated.

Yes, they are making it clear that they are not asking for a prospective double-blind study where one group would be intentionally unvaccinated. I’d love to know how that new clause was inserted. It’s probably the simple reality that such a study is unethical and would make this bill dead on arrival.

United States of Autism

A number of posts have discussed fictional films and documentaries about autism.  Here is a release from The United States of Autism:

After the sizzling US domestic success of the award winning film “The United States of Autism”, it will begin its Oscar qualification run in New York City and LA from August 9th – 16th. With multiple daily showings during the week at Quad Cinema in NYC’s Greenwich Village and Laemmle’s Playhouse 7 in Pasadena, CA, it seeks to be the first documentary focused on autism to ever win an Academy award at the 86th Annual Academy Awards on March 2nd, 2014 in Hollywood, CA.

The film follows Richard Everts’ 11,000 mile, 40 day journey across America to visit twenty families and individuals living with autism. Interviewees come from a broad cultural spectrum from Mormon to Muslim and Hispanic to Chinese. Each person shows how autism has shaped their world, sometimes for better, sometimes for worse, yet always with significance. What Everts learns along the way changes not only his life, but the lives of those he meets, forever.

The United States of Autism donates 25% of net proceeds from each theatrical screening or up to 100% net of a fundraising private event to a local family/individual/organization affected by autism. It’s helped raise over $20,000 for local autism groups around the country to date. For more information on hosting or to request a screening, go to http://www.usofautism.com/the-screenings

Question

This blog has had a huge spike in pageviews over the past couple of days, and I'm not sure why. I'm certainly not complaining but I'm curious about the reason.  Has a bigger website linked to it?  If you know, please email me at jpitney@cmc.edu.

Abuse in Sweetwater

In South Florida, WTVJ reports on abuse:

Police discovered Thursday that a 30-year-old autistic man was being kept in “dungeon-like conditions” in a Sweetwater trailer home, authorities said.

Gladys Jaramillo told police that on numerous occasions she has locked her son in his room with iron bars and a dead bolt so she could go out with her boyfriend and enjoy herself, her arrest affidavit said.

The 56-year-old mother faces charges of aggravated abuse and neglect on a mentally disabled adult and false imprisonment, police said. She was being held on $15,000 bond early Friday. It wasn't immediately known whether she has an attorney.

AP reports:

Investigators said Jaramillo also admitted giving her son sedatives “so he would fall asleep throughout the time she was away,” the report said.

The man was taken to a hospital with scratches and bruises and is being evaluated to see if he may need any services going forward. The Department of Children and Families is working with the Agency for Persons with Disabilities to find an appropriate place for the son to live, such as with a family member or a group home, after he leaves the hospital, DCF spokeswoman Lissette Valdes-Valle said.

The case will go to court in the next few weeks, where a judge will appoint a guardian for the man.

...

The son was on a waiting list to receive services from the Agency for Persons with Disabilities, the person familiar with the investigation said. Services can include adult day care; having a companion come to the home to help with things such as cooking and cleaning; occupational therapy; and construction improvements so the patient can be more independent in their home, according to the agency’s website.

Video from WBFS-TV:

Cuomo Administration Backs Down in Licensing Dispute

Autism Speaks reports that the administration of New York Governor Andrew Cuomo has retreated from its earlier position required that ABA practitioners obtain a state license in order to qualify for insurance reimbursement under the state mandate. New York has no ABA license.

Autism Speaks, through its Legal Resource Center, urged the state agency to drop the licensing requirement earlier this year, arguing it was in clear violation of the 2011 law which specified that national certification by the Behavior Analyst Certification Board (BACB)would be sufficient for ABA practitioners to provide services in New York.

When DFS proceeded with the regulations, Autism Speaks and other advocates, such as the New York State Association for Behavior Analysis (NYSABA) worked with Morelle and Fuschillo to introduce legislation creating a New York ABA license. The two lawmakers managed fast passage of the licensing bill through both houses of the Legislature in June.

With the licensing bill about to be presented to Governor Cuomo, DFS, which had continued working with Autism Speaks and other advocates, issued a new regulation making clear that BACB certification, as specified under the original 2011 law, would now be sufficient. The new regulations took immediate effect, enabling families with state-regulated health insurance coverage to now access affordable ABA care for their children with autism.