Research Priorities

At Forbes, Emily Willingham faults Autism Speaks for emphasizing certain kinds of research over others:

They’ve released their list of 2013′s “Top Ten Advances in Autism Research,” determined by their “science staff and scientific advisory committee.” The list gives us studies involving early detection, prevention, genetics, “rare but real optimal outcomes,” epigenetics, a correlational finding of GI issues and autism that didn’t seem to tell us anything we didn’t already know, and the inevitable mouse study that showed no effects related to autism and social behaviors but might hold potential for OCD research. It’s not surprising to me, but very little on this list comes close to reflecting research that autistic people would like to see come into focus. It’s not that such work doesn’t exist. It does. It just didn’t make the list.

OK, so it’s science. Genetics and epigenetics et al. constitute hot stuff, what qualifies as “sexy” in science. Jobs, skills of daily living, education, quality of life? About as sexy as dishwashing.

Assistive Technology

The Arizona Republic reports:

Jan Cawthorne, Mesa Public Schools’ special-education director, said assistive technology is not new for her district or many others receiving the grant money. What is new is the portability of many devices — and a coolness factor that didn’t exist before the iPad, she said.

Since the advent of tablet computers, more special-education students and their parents are requesting devices from school districts, she said.

“Assistive technology used to mean big, clunky things that kids were embarrassed to be seen with,” Cawthorne said. “Now, it is a cool thing to use.”

The story quotes  Patricia Geraghty, Mesa Public Schools’ director of training and compliance:

“When you give non-verbal kids devices, sometimes you find out they know a lot more than you realize,” Geraghty said. 

It also quotes teacher Emy Lydford:

“They are able to express so much more. We can move faster,” she said.

Lydford said the “talkers,” as she calls the vocal tablets, also help students develop better relationships with each other — and with kids they encounter on the playground and bus.

In The Autistic Brain, Temple Grandin explains:

Tablets, for example, have a tremendous advantage over plain old computers, even laptops: You don't have to take your eyes off the screen. Usually typing is a two-step process. First you look at the keyboard, then you look at the screen to see what you have typed. That could be one step two many for someone with severe cognitive problems. Before tablets, a therapist would have to mount the keyboard of a desktop computer on a box so that it was right below where the print was appearing on the screen.In tablets, however, the keyboard is actually part of the screen, so eye movement from keyboard to the letter being typed is minimal. Cause and effect have a much clearer correlation. That difference could well be meaningful in terms of allowing people with extreme sensory problems to tell us what it's like to be them.

Suicide, Murder and Attempted Murder

Previous posts have discussed parents who have tried to kill their ASD children.  Unfortunately, here is another such post.

From AP:

A northern Lower Michigan woman charged with attempted murder in the carbon monoxide poisoning of her autistic 14-year-old daughter waived her right Thursday to a probable cause hearing.

Authorities say they found Kelli Stapleton and her daughter Isabelle unconscious Sept. 3 in the family's van in Benzie County's Blaine Township in an apparent murder-suicide attempt.

Kelli Stapleton's blog had chronicled the challenges her family faced caring for Isabelle, who has severe autism and sometimes had violent outbursts.

...

In her blog, Stapleton wrote that her daughter, nicknamed Issy, had completed an intense program for severely autistic children near Kalamazoo, but her education plan had been abruptly changed by school officials.

"I have to admit that I'm suffering from a severe case of battle fatigue," Stapleton wrote on her blog, The Status Woe, shortly before the incident.

In Alabama, WAFF-TV reported a couple of weeks ago:

Madison County Coroner Craig Whisenant confirmed Monday the cause of death of eight-year-old Randle Barrow and his mother, 42-year-old Delicia Barrow.

Randle's death was ruled a homicide by drowning. Delicia's death was ruled suicide by smoke inhalation.

Deputies found Randle's body in the Tennessee River in the Honeycomb area of Marshall County, early Sunday morning. Huntsville police started searching for the autistic child after a fire at his home.

Police responded to 4900 Alburta Road in Huntsville to check on the welfare of the child after he didn't show up to school for two days. Upon arrival, officers noticed smoke coming from the roof of the house. Firefighters were able to put the fire out. Police found Delicia Barrow, inside the residence. She was pronounced dead after being taken to the hospital.

Police said they couldn't find Randle inside the house and began a search for the missing child on Saturday.

In a statement Sunday night, the Marshall County Sheriff's Department said they received a tip earlier in the day from Huntsville Police that a note had been found inside the home with information on the whereabouts of Randle.

The news of both deaths came as a complete shock to those who knew them. Elizabeth Quarles, Randle's former teacher, said they "Never, never saw it coming. When we heard that he was missing, our initial reaction was to meet and let's go find him. Until we got more details, we thought he had ran."

Randle's behavioral therapist, Madison Brooks, also described the child in glowing terms.

"Randle made every kid in his classroom smile constantly. He was hilarious; the happiest kid. He would do anything for anybody. If he saw a child upset, he cried for that child. He understood," said Brooks.

KanCare Update

The Wichita Eagle reports on developments in Kansas:

When the state announced Friday that it would delay bringing long-term support services for people with intellectual and developmental disabilities into KanCare – the state’s privatized Medicaid program – Aldona Carney was thrilled.

That move had been scheduled to take place Jan. 1, despite the efforts of advocates of the developmentally disabled to delay or prevent it.

“I’m hoping they’ll carve it out completely and come to their senses,” said Carney. She and her husband, Pat, have a 19-year-old son, Neil, with severe autism.

Since KanCare went into effect for medical services last January, Carney said, their son has had issues with getting the proper medications and with his Medicaid card being terminated without notification.

They were later told it must have been a computer glitch, and he was re-entered into the system, Carney said.

Those problems have made her worry that her son’s day-to-day care could also suffer if it is included in the program.

The delay came after the state received a letter from the federal Centers for Medicare and Medicaid Services saying it would not approve an amendment to a waiver that would allow Kansas to include services for the developmentally disabled in KanCare.

A state spokesperson said the delay is temporary and is not related to the readiness of the state to transition the developmentally disabled to KanCare.

Read more here: http://www.kansas.com/2013/12/27/3198609/state-to-delay-kancare-for-those.html#storylink=cpy

Autism and Sex Selection

From the Sydney Morning Herald:

Parents are increasingly asking to choose the sex of their children in an attempt to lower their baby's risk of diseases and disorders ranging from cancer to autism, IVF doctors say. 

Figures from one of Sydney's top IVF clinics show about one in 20 parents seeking embryo screening are looking to have a female baby to reduce their risk of autism.

The question is, what is the best thing for that woman: continuing to try on her own and miscarrying versus doing IVF and testing the embryos? We can't know for sure that everybody definitely benefits.

Fertility experts say the issue is the tip of the iceberg with a huge range of tests becoming available. Some clinics in the US now offer testing for up to 600 different genetic markers. 

The medical director of the fertility company Genea, Mark Bowman, said his organisation had done more than 100 cycles of what is known as "pre-implantation genetic diagnosis" this year, mostly for conditions such as cystic fibrosis, where family members have the condition and a gene mutation is known to be responsible.
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"In a way these tests are the ultimate preventative medicine," Associate Professor Bowman said.

Read more: http://www.smh.com.au/national/health/why-ivf-parents-are-choosing-girls-over-boys-20131225-2zwrf.html#ixzz2ogZACupc

Nonspecialists

On a day-to-day basis, ASD children spend most of their time with nonspecialists. Indeed, psychiatrists and other specialists may be scarce or inaccessible in many places. A new study suggests that nonspecialists can be most helpful. From the editor's summary of  Reichow B, Servili C, Yasamy MT, Barbui C, Saxena S (2013) Non-Specialist Psychosocial Interventions for Children and Adolescents with Intellectual Disability or Lower-Functioning Autism Spectrum Disorders: A Systematic Review. PLoS Med 10(12): e1001572. doi:10.1371/journal.pmed.1001572

The researchers identified 29 controlled studies (investigations with an intervention group and a control group) that examined the effects of various psychosocial interventions delivered by non-specialist providers to children (under 18 years old) who had a lower-functioning ASD or intellectual disability. The researchers retrieved information on the participants, design and methods, findings, and intervention characteristics for each study, and calculated effect sizes—a measure of the effectiveness of a test intervention relative to a control intervention—for several outcomes for each intervention. Across the studies, three-quarters of the effect size estimates were positive, and nearly half were greater than 0.50; effect sizes of less than 0.2, 0.2–0.5, and greater than 0.5 indicate that an intervention has no, a small, or a medium-to-large effect, respectively. For behavior analytic interventions (which aim to improve socially significant behavior by systematically analyzing behavior), the largest effect sizes were seen for development and daily skills. Cognitive rehabilitation, training, and support (interventions that facilitates the relearning of lost or altered cognitive skills) produced good improvements in developmental outcomes such as standardized IQ tests in children aged 6–11 years old. Finally, parental training interventions (which teach parents how to provide therapy services for their child) had strong effects on developmental, behavioral, and family outcomes.

Because few of the studies included in this systematic review were undertaken in low- and middle-income countries, the review's findings may not be generalizable to children living in resource-limited settings. Moreover, other characteristics of the included studies may limit the accuracy of these findings. Nevertheless, these findings support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or a lower-functioning ASD, and indicate which interventions are likely to produce the largest improvements in developmental, behavioral, and family outcomes. Further studies are needed, particularly in low- and middle-income countries, to confirm these findings, but given that specialists are scarce in many resource-limited settings, these findings may help to inform the implementation of programs to improve outcomes for children with intellectual disabilities or lower-functioning ASDs in low- and middle-income countries.

Psychiatrists, Insurance, and Access

 Disability Scoop reports:

Psychiatrists, who are often relied on by individuals with developmental disabilities, are less likely than other doctors to accept insurance, a new study finds.

Slightly more than half of psychiatrists said they accepted private insurance in 2009-2010. A similar number took Medicare but even less — 43 percent — accepted Medicaid.
The findings come from an analysis of a nationally-representative survey of doctors that’s conducted annually by the U.S. Centers for Disease Control’s National Center for Health Statistics. Each year about 1,250 doctors are polled, some 5.5 percent of whom are psychiatrists.

“More than physicians in other specialties, psychiatrists accept lower rates of insurance, and those who don’t take insurance are likely charging cash for their services,” said Tara Bishop, an assistant professor at Weill Cornell Medical College who led the study published this month in JAMA Psychiatry.

“I suspect our study conclusions will be an eye opener for both the public and the medical community,” Bishop said. “No prior studies have documented such striking differences in insurance acceptance rates by psychiatrists and physicians of other specialties — primarily because no one has looked closely at the issue.”

Autism, Activism, and Intellectual Disability

 At The Los Angeles Times, Thomas Curwen writes:

Ido Kedar belongs to a rare confederacy.

Diagnosed with autism when he was a child, Kedar — now 17 and a junior at Canoga Park High School — refuses to be defined by his disorder and joins a number of other autistic activists who are out to redefine popular assumptions about intelligence and disability.

“Who are we?” Kedar recently wrote on his blog, “Ido in Autismland.” “Silent fighters, that’s who.… It is time to be advocating for ourselves. Why forever must the theories of scholars be listened to over the people with autism themselves?”

Mostly unable to speak, they communicate with iPads and letter boards. They blog, write books, make films. Mental deficiency and autism, they say, are not synonymous.

Some researchers and critics, however, are not so certain. In 2010, the journal Psychological Medicine published a study that concluded that of 156 autistic children, 55% had an intellectual disability. [See more recent contrary data here.]

Kedar, the subject of a profile in the Sunday Times, hopes more parents with autistic children will question these conclusions. For years, aides and teachers didn’t give Kedar credit for his work, and that frustration prompted him to write his blog and turn his blog into a book of the same name.

ABLE Act Has 60 Senate Cosponsors

A Thursday release from Senator Bob Casey (D-PA) said that the ABLE Act has 60 cosponsors -- the magic number necessary to pass most legislation in the Senate.

Today, support continued to grow for the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647), introduced by U.S. Senators Bob Casey (D-PA) and Richard Burr (R-NC), bringing the total number of co-sponsors in the Senate to 60 members. Introduced in the 113th Congress in February, this bill would provide an improved quality of life for individuals with disabilities through tax-free savings accounts.

“This is a significant step forward for the ABLE Act and for the families of children with disabilities,” Senator Casey said. “Now that this bill has 60 cosponsors, I’m urging the Senate to take action on it in the new year. The fact that only 6 bills in all of Congress have this many cosponsors is a sign of the overwhelming support for this effort to make a major difference in the lives of these families.”

“The ABLE Act is a commonsense piece of legislation that allows families of disabled children to have the same access to tax preferred savings accounts as the parents of college-bound kids,” Senator Burr said. “I am very excited that we now have 60 Senators on board and can hopefully expect swift movement on the Senate floor to send this bill to the President.”

The legislation would amend Section 529 of the Internal Revenue Service Code to 1986 to allow use of tax-free savings accounts for individuals with disabilities. The bill, first introduced in 2006, would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

Schools and Cuts

The New York Times looks at education cuts, with a case study from Coatesville, PA:

And during social studies class at Scott Middle School, Keith Lilienfeld tries to keep control of a class of 25 students, 10 who need special education services, four who know little or no English and others who need more challenging work than he has time to give.

“I’m up there putting out fires like you wouldn’t believe,” said Mr. Lilienfeld, who used to have the help of two or three classroom aides. “There’s only one of me, and there’s a need for about five of me in there.”

Across the country, public schools employ about 250,000 fewer people than before the recession, according to figures from the Labor Department. Enrollment in public schools, meanwhile, has increased by more than 800,000 students. To maintain prerecession staffing ratios, public school employment should have actually grown by about 132,000 jobs in the past four years, in addition to replacing those that were lost, said Heidi Shierholz, an economist at the Economic Policy Institute in Washington.
...
On a recent afternoon at Scott Middle School, Mr. Lilienfeld placed a red rubber ball atop a stool at the front of the classroom. The setup served as a makeshift buzzer in a quiz game intended to help students review for a coming test.

One English-language learner put his head on his desk and refused to participate. Another girl, who receives special education services, spent the entire period doodling on a notepad. When several boys taunted a girl and she responded with an explosive “Shut up!” Mr. Lilienfeld ordered her out of the room.

“There is no way I could adapt the curriculum to meet the needs of all the kids in my class,” he said. During the next period, 26 students filed into Mr. Lilienfeld’s classroom for a study hall period, which is used to fill out their schedules because the school has cut so many electives.

New York Responds to Preschool Fraud

It is depressing to reflect that autism and other disabilities create so many opportunities for fraud and profiteering.

The New York Times reports:

Responding to reports of fraud and abuse, Gov. Andrew M. Cuomo this week signed into law a bill to strengthen oversight of New York State’s preschool programs for disabled children.

The law will empower the office of the state comptroller to routinely audit the finances of companies that provide special education services, which have come under scrutiny amid a series of scandals involving exorbitant fees and shoddy care.

New York State has the costliest prekindergarten system for disabled children in the country, with $2 billion spent on programs for 3- and 4-year-olds with disabilities, including developmental ones like autism and Down syndrome. In New York City, annual costs per child have soared to about $40,000, totaling $1.2 billion per year, about 6 percent of the city’s education budget.

State lawmakers sought to tighten control of New York’s special education system after a series of articles in The New York Times and several audits by the state comptroller, Thomas P. DiNapoli, revealed improprieties. In some instances, preschool providers charged taxpayers for luxurious trips abroad, jewelry and cars; in other cases, companies distorted evaluations of children to justify costly interventions.

In June, the lawmakers unanimously approved the bill, signed by Mr. Cuomo on Wednesday, to require audits of every special-education preschool contractor in the state by 2018.

Click here for more from the Comptroller. 

 

 

Caregivers of ASD Children Have a Tough Time

Autism has a new article by Rini Vohra and colleagues titled  "Access to Services, Quality of Care, and Family Impact for Children with Cutism, other Developmental Disabilities, and other Mental Health Conditions.  The abstract:

This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both [emphasis added]

From the conclusion:

Based on our study findings, one can conclude that caregivers of children with ASDs face significant barriers in access to services and face adverse family impact. In addition, children with ASDs also receive poor quality of care compared to caregivers of other special needs conditions (DDs and MHCs [developmental disabilities and mental health conditions] ). Our findings highlight that children with ASDs form a vulnerable population within the group of DDs that may require greater provider and caregiver attention as compared to children with DDs and MHCs. Our findings also suggest that caregivers of children with ASDs may require services and care that extend beyond that provided by the current health-care system. Public policies and state-level programs are needed to reduce the deficits in health-care services for children with ASDs.

IDEA Paperwork

At Education Week, Christina Samuels writes:

Two House Education Committee leaders are asking the Government Accountability Office to find out which parts of the Individuals with Disabilities Education Act create the most paperwork for schools and districts, and to figure out why no state has taken advantage of paperwork-reduction pilot programs that were written into the law when it was reauthorized nearly 10 years ago.

U.S. Rep. John Kline, R-Minn., the chairman of the House Education and the Workforce committee, and Rep. Todd Rokita, R-Ind., the chairman of the House education subcommittee on K-12 policy, both signed the letter, dated Dec. 17. In it, they also asked the agency to find out if innovative technology could play a role in reducing paperwork, and if administrative redundancies make the paperwork problem worse.

... 

The Dec. 17 letter from the legislators said that nothing ever came from a provision in the law that would allow the U.S. Department of Education to create model IEP forms, either. Those model forms exist, but have never been "adopted in the field," Kline and Rokita write.

ERs as Timeout Rooms

A release from Legal Services NYC:

Legal Services NYC (LSNYC) and Cuti Hecker Wang LLP have filed a lawsuit on behalf of six New York City children who have all been repeatedly removed or threatened with removal from school by Emergency Medical Services (EMS) even though they were not in need of emergency medical care. The suit was filed against the City of New York and the Department of Education.

The lawsuit, filed in federal court, alleges that school personnel resort to calling EMS in response to tantrums and other behavior problems because the school system lacks procedures and its staff lacks training for appropriately assisting and calming children in those circumstances. In numerous instances, school and EMS personnel insisted on transporting the children, who were calm by the time EMS arrived, and most of whom are between five and seven years old, to hospitals against the express wishes of their families. As a result, these students have not only been removed from school against their wills, they have also been traumatized by unnecessary trips to emergency rooms and deprived of valuable instructional time.

LSNYC advocates have seen a steady increase recently in the number of children removed from their classrooms and taken by ambulance to ERs for emotional disturbances that do not involve the threat of harm to themselves or others. In each school year from 2009-2010 through 2011-2012, schools called EMS regarding over 3,000 students due to alleged disruptive behaviors. Over those three school years, the number of EMS calls due to alleged disruptive behaviors increased each year. By 2011-2012, there were over 3,600 calls from schools to EMS for students with alleged disruptive behaviors. The majority of students removed by EMS are students with disabilities.

The Wall Street Journal reports:

More than 22% of the 15,130 calls for ambulances placed by schools in the 2011-12 school year were related to disciplinary infractions, according to Legal Services NYC, which sued the Department of Education and Fire Department of New York for the data.

...
Nelson Mar, an attorney for Legal Services NYC who is representing the parents, said fire department protocols say that children can be transported by EMS against a parent's wishes only when the child's life is at stake, or if it is clear that even a small delay will jeopardize the child's health.

"In some ways the schools are treating the hospital emergency rooms as timeout rooms," he said.
...

One mother suing the city, whose son has autism, said the frequent calls to pick up her son forced her to stay close to school to try to prevent the frequent hospital trips.

"My life was basically just dropping him off, staying in the area, not doing anything else, walking to the library," said the mother, who asked not to be named.

A Football Victory

The New York Post reports:

Anthony Starego, the autistic placekicker who won a New Jersey court battle to play an extra season of high-school football, is going out a champ.

His team, the Brick HS Green Dragons, won the Central Group IV title last week. Anthony contributed two extra points in the 26-15 victory.

It’s the first time a student with autism has played on a championship team.

“I’m going to celebrate with my mom and dad for the rest of my life!” Anthony said.

Manhattan civil-rights lawyer Gary Mayerson led the fight to grant Anthony a fifth season. The New Jersey State Interscholastic Athletic Association at first barred him from the team when he turned 19 and had played four seasons.

The NJSIAA finally agreed to let Anthony play to inspire other student-athletes with disabilities.
“We never set out to make history,” Mayerson said. “We set out to give a kid with the love of the game an opportunity to play.”

“It shows anything is possible,” said Anthony’s dad, Ray Starego. “The message is don’t’ set any limits on your kids — they will do more than what you ever thought.”

Study of Autism and Somali Children

Previous posts have discussed autism among Somali immigrants.  The New York Times reports:

A long-awaited study has confirmed the fears of Somali residents in Minneapolis that their children suffer from higher rates of a disabling form of autism compared with other children there.

The study — by the University of Minnesota, the Centers for Disease Control and Prevention, and the research and advocacy group Autism Speaks — found high rates of autism in two populations: About one Somali child in 32 and one white child in 36 in Minneapolis were on the autism spectrum.

The national average is one child in 88, according to Coleen A. Boyle, who directs the C.D.C.’s Center on Birth Defects and Developmental Disabilities.

But the Somali children were less likely than the whites to be “high-functioning” and more likely to have I.Q.s below 70. (The average I.Q. score is 100.)

 The Minneapolis Star-Tribune reports:

While the study established a high rate of autism in Somali children, Hewitt said, it was not designed to address some of the pressing “why” questions — such as why autism rates vary so sharply among racial and ethnic groups. Nor did it address some of the persistent fears inMinneapolis’ growing Somali immigrant community about the origins of autism in their children.

Some in the community believed that autism was only a problem among children born in the United States, and not among Somali children who moved here with their parents. Hewitt said that wasn’t addressed by this study, but that researchers have birth record data to address that question next. The report also didn’t address fears among some in the community that pediatric vaccines were somehow to blame.

The study did find that children of all races and ethnicities in Minnesota aren’t assessed for an autism diagnosis, on average, until they are 5. That is late considering that the disorder can reliably be detected by age 2.

Misconduct by Teachers

The Daily Breeze reports on Suzanne Hutton, a special ed teacher at Howard Wood Elementary School in Torrance, California. Before entering a December 5 IEP, she posted on Facebook.

The meeting began at 9 a.m. By 9:15 a.m., parents of another child in the class had screen-grabbed the post and emailed it to Jacqueline Williams, the district’s director of special education. By the time the meeting ended at 10:30 a.m., an attorney who represents the school district had seen the email and forwarded it to human resources, according to one of the parents who’d been monitoring the teacher’s posts. The next morning, Hutton was removed from the classroom.

“You cross the line when you call a student severely impacted with autism a ‘hot mess,’ ” said the mother of a child in the class who asked not to be identified. “And she’s not just saying that to friends after work. She’s saying this on a completely public, open forum, where anyone can go see it.”

... 

“She’s talking about a heavily impacted child and about a meeting that should be confidential,” said one of the parents.

He added that special-education parents already tend to worry that teachers think negatively of them, so her post had the effect of confirming those fears.

“I want her career,” he said. “She should never be allowed to work with kids again.”

ABC reports:

A Florida elementary school teacher who was fired for feeding an autistic child hot sauce soaked crayons is being re-instated on the orders of a judge who rejected the school district's appeal to keep her out of the classroom.

Lillian Gomez was fired from her job at Sunrise Elementary School in Kissimmee, Fla., in February 2012 after school officials found out that Gomez had allegedly put jumbo-sized crayons in a cup and soaked them for days in hot sauce before moving them to a bag that was labeled with the student's name.

Gomez denied force-feeding the crayons and said she did it to deter the student from eating art supplies, her attorney said.

A spokeswoman for the Osceola County School District told ABC News on Thursday that after losing its appeal, the district is now placing Gomez at a different elementary school to "support other teachers" where she will have access to special needs students.

...
The school spent more than $50,000 in attorneys fees litigating the case, claiming in court papers that Gomez's "effectiveness" as a teacher was "severely impaired" as a result of the incident.

But the appeals judge disagreed, saying the "conduct was not so egregious" that firing Gomez could be a decision made by the courts.

TRICARE Setback

Many posts have discussed the issue of ABA coverage under TRICARE. Autism Speaks reports:

An 11th-hour agreement on a new Defense bill hammered out by the Senate and the House dropped dozens of proposed amendments, including a provision to improve TRICARE coverage for ABA treatment for military dependents with developmental disabilities, including autism.

Approved by the House last spring, the amendment to the FY14 National Defense Appropriations Act (NDAA) enjoyed bipartisan support in the Senate but was one of dozens that never came up for a vote as Congress raced to meet a self-imposed Friday deadline to reach agreement on a final bill. As a result, the effort to improve TRICARE coverage for applied behavior analysis (ABA) will have to start over from the beginning in Congress next year, the third time since 2012.

Class Action Suit in Oregon -- Update

In Oregon, The Lund Report provides an update on Providence Health Plan, which has been fighting to deny ABA coverage. 

In its latest volley, Providence asked Judge Michael H. Simon on Wednesday to deny a class-action status to plaintiffs suing the insurer for its denial of coverage. A class-action would allow the plaintiffs’ lawyers to represent all Oregon Providence members with autism spectrum disorder. If the plaintiffs win a class-action, Providence could be forced to pay for applied behavior analysis treatment cases for many more children than the two identified in the lawsuit.

...

 The new Oregon law requires applied behavior analysis coverage by 2016 for private health insurance plans, but public employees qualify in 2015. Since Providence administers the primary health insurance plans for the Public Employees Benefit Board, it intends to voluntarily offer autism coverage for all its members on Jan. 1, 2015, according to its attorney, William Gary.

But Providence is clearly not ready to pay for the treatment today. And, in the insurance company’s latest gambit, it has denied two more claims for applied behavior analysis on the novel argument that the insurer simply doesn’t provide care for developmental disabilities — the issue now before the federal court.

...

In his legal brief on behalf of Providence, attorney Arden Olsen wrote that Providence chose its current tactic because the insurer has no legal recourse if an independent review board physician rules against them on experimental grounds. The argument that Providence does not cover developmental disabilities is a legal question and not a medical question and gives them their day in court.

Oregon law does allow insurers to refuse coverage for many developmental disabilities, such as tutors and special education. But the law requires coverage for the treatment of autism spectrum disorder, as Providence itself noted in its 2011 rate filing with the Oregon Insurance Division:

“Providence believes we are able to exclude treatment for developmental and learning disabilities, other than autism spectrum disorders, under the mental health coverage of our plan because the statutory definition of mental health, OAR 836-053-1404, allows for such exclusion.”

Latest Alternative Therapies: Worms and Baths

Many posts have discussed alternative therapies for autism.  Often these therapies either have only a thin scientific basis (a small number of small-scale studies) or rest purely on conjecture. Health Day reports:

Adults with autism who were intentionally infected with a parasitic intestinal worm experienced an improvement in their behavior, researchers say.

After swallowing whipworm eggs for 12 weeks, people with autism became more adaptable and less likely to engage in repetitive actions, said study lead author Dr. Eric Hollander, director of the Autism and Obsessive Compulsive Spectrum Program at Montefiore Medical Center in New York City.

"We found these individuals had less discomfort associated with a deviation in their expectations," Hollander said. "They were less likely to have a temper tantrum or act out."
The whipworm study is one of two novel projects Hollander is scheduled to present Thursday at the annual meeting of the American College of Neuropsychopharmacology in Hollywood, Fla. 

The other therapy -- hot baths for children with autism -- also was found to improve symptoms, Hollander said.

Inflammation caused by a hyperactive immune system, which is suspected to contribute to autism, is the link between the two unusual but potentially effective treatments.

Chickens and Fair Housing

Many posts have discussed therapy animals, and one recent case involved a boy and his chickens. The Daytona Beach News-Journal reports:

A Longwood attorney says he has reached an agreement with DeBary officials to allow a 3-year-old autistic boy to keep his backyard chickens.

Mark Nation said Wednesday the city agreed to grant a special accommodation for J.J. Hart, whose family’s permit to keep three chickens is set to expire Dec. 31.

The DeBary City Council has scheduled a special meeting at 6 p.m. Dec. 18 to consider “granting a reasonable accommodation under the federal and Florida Fair Housing Acts.”

The council voted 3-2 last week to kill the program that allowed backyard chickens with permits. Since then, J.J.’s story has attracted worldwide attention, from NBC’s “Today” show to Fox News and the Daily Mail of London.

“I approached the city and informed them laws would be violated in the event of the removal of his chickens,” Nation said.

By email, he shared a statement laying out his legal case. Under the law, he said J.J., who was diagnosed with autism spectrum disorder, would qualify as a disabled person whose right to accommodation cannot be violated by city codes.

“The Federal Fair Housing Act ... prohibits the City of DeBary from ... a refusal to make reasonable accommodations in rules, policies, practices or services, when such accommodations may be necessary to afford such person equal opportunity to use and enjoy a dwelling,” the analysis reads.

House Passes Research Bill

Leesburg Today reports:

A bill honoring 10-year-old Leesburg resident Gabriella Miller to provide $126 million for pediatric research grants passed in the U.S. House of Representatives today.

“Less talking, more doing. We need action,” the vibrant little girl told a crowd during an event in October, and some of the most powerful men and women in Congress repeated that quote on the House floor Wednesday.

Gabriella was diagnosed with a cancerous brain tumor in November 2012, and in the 11 months that followed she became an outspoken advocate for more awareness and funding for pediatric diseases. She lost her battle with the disease Oct. 26.

The Gabriella Miller Kids First Research Act would require the director of the National Institutes of Health to allocate $126 million—$12.6 million each year for 10 years—of appropriated funds for pediatric research. The money would be re-designated from the Presidential Election Campaign Fund for national party conventions to made into research grants for pediatric autism, cancer and other diseases.

The bill, with more than 150 co-sponsors, passed on a 295-103 vote.

The Hill reports:

Most Democrats — 102 of them — rejected the bill as a weak attempt to restore a small amount of the spending cuts the GOP has already foisted upon the National Institutes of Health (NIH).

"It is a disingenuous and empty attempt by the Republicans to divert attention from the fact that they have voted to cut research time and time again," said Rep. Frank Pallone Jr. (D-N.J.).

The bill would take $126 million in money that is now meant to fund presidential nominating conventions. It would spread that money out over 10 years.

But Democrats who voted against it argued that Republicans are responsible for $1.5 billion in cuts to the NIH, and that the bill does not represent a real attempt to restore funding.

"That's why I think the Republicans are not making a sincere effort to support NIH research," Pallone said. "This is a joke." 

Majority Leader Eric Cantor (R-VA) has been pushing hard for the bill:

DC and Private Schools

At The Huffington Post, Joy Resmovits reports on Greg Masucci and Maya Wechsler, who are trying to get their son Max a decent education from the District of Columbia.

After cycling Max through four public schools in his short life, Greg and Maya have come to the conclusion that the District of Columbia Public Schools system doesn't have the capacity to educate their son. Federal law states that public school systems must foot the bill for private schooling for students like Max if the public schools can't give him a "free and appropriate public education."

How you define "appropriate," though, is where it gets blurry.

Last November, Max's family filed for private school funding. In January, a DCPS hearing officer denied their claim on the grounds that Max's lack of progress is not legal reason enough to grant him free tuition.

Washington, D.C., like other school districts throughout the country, is currently trying to reduce the number of special education students on the rolls of costly private schools. D.C. Mayor Vincent Gray has called for reducing his city's private placements by half. A document obtained by The Huffington Post shows that the district is offering incentives to public and charter school administrators who keep special education students under their roofs. But in a positive sign for special education students in D.C., the most recent results on the National Assessment of Educational Progress found that students with disabilities increased their scores by nine points in fourth grade reading and eighth grade reading and math, and by three points in fourth grade reading.

The district declined to discuss Max's case, citing privacy and pending litigation. It asserts the switch from private to public schools assuages a civil rights concern, because students with disabilities can stay in regular public schools where they can be included and not segregated. "Federal law requires that local education agencies evaluate every child at least once a year to determine whether or not they are in the least restrictive environment possible," Dr. Nathaniel Beers, a pediatrician who oversees special education for DCPS, told HuffPost. "Is there a kid in a self-contained classroom who doesn't need to be? Is this a kid who is in a more restrictive setting, like one of our self-contained school buildings?"

But many special needs advocates suspect it's an attempt to save money. For years, a court injunction compelled D.C. to place more special education students with even low or moderate disabilities in private placement. Consequently, private school tuition ate significantly into the city's school budget.

Media, Mice, and Autism

UPI reports:

Changes in bacteria in the gut can influence autism-like behaviors in a mouse model, say researchers at California Institute Technology.

Sarkis K. Mazmanian, a professor of biology, said to study this gut--microbiota--brain interaction, the researchers used a mouse model of autism previously developed at Caltech in the laboratory of Paul H. Patterson, the Anne P. and Benjamin F. Biaggini Professor of Biological Sciences.

"Traditional research has studied autism as a genetic disorder and a disorder of the brain, but our work shows that gut bacteria may contribute to ASD-like symptoms in ways that were previously unappreciated," Mazmanian said in a statement. "Gut physiology appears to have effects on what are currently presumed to be brain functions."

The research has been getting a great deal of media attention.  As is usually the case with autism research "breakthroughs," much of the coverage overlooks important caveats.

Jessica Wright reports at The Simons Foundation:

“This is a real limitation in the conclusions from this study, as, in many ways, social interaction deficits are at the core of the phenotype of autism,” says Ted Abel, professor of biology at the University of Pennsylvania, who was not involved in the research. He suggests that other mechanisms may underlie the social behavior in these mice.

The researchers emphasize that the results are in mice and that they may model only one type of autism. “We need to be very cautious here. We are looking at an initial report in one mouse model,” says Mazmanian. “At best, they represent a subset of the autism population.”

Researchers also shouldn’t underestimate the challenges of trying to change the microbiome in people, says [Yale Professor David] Littman. Finding a gut molecule that is elevated in people with autism and pinning down bacteria that reverse its production would be “a tremendous advance,” he says. “It’s very difficult to target the microbiome without knowing what’s going on.”

The researchers do, however, have promising preliminary results with mice that carry mutations seen in people with autism. They are now treating mice with commercially available probiotics and are planning a clinical trial with B. fragilis in people with autism. These are only the early first steps, notes Patterson. “I don’t want people rushing out trying to buy B. fragilis,” he says.

Chickens

Many posts have discussed therapy animals (which are not quite the same thing as service animals). WOFL in Orlando reports:

An autistic DeBary boy will have to give up his pet chickens, despite his parents' best efforts, after the city council denied the family an extension.

Some council members said there wasn't enough community support to go ahead with allowing chicken permits, but the family says this fight isn't over.

Three-year-old J.J. Hart made national news a year ago when his family said chickens help with his autism.

"A lot of people with autism have self-harming tendencies," says father Joe Hunt. "J.J. used to pull his hair out and throw his head back to the ground. The chickens taught him to be calm."
A doctor recommended the chickens as a way to help with therapy, but a city ordinance banned residents from owning chickens. With huge support form the community and even state lawmakers, the family convinced the council last December to experiment with a 1-year chicken pilot program.

Seven families filed for permits. Now that the year is almost up, the council voted 3 to 2 to cancel the program and prohibit chickens in the city.

FOX 35 News Orlando

Autism and the Environment: New Study

Deepa Fernandes writes at KPCC about a new study showing that children with a certain gene mutation associated with autism are more likely to develop it when exposed to high pollution.

Previous studies by USC researchers Heather Volk and Daniel Campbell found links between autism and air pollution exposure for pregnant women and infants. This one looked specifically at the MET gene - which researchers have already linked to autism - and how it's affected when exposed to high amounts of air pollution, finding an augmented risk of Autism Spectrum Disorder in children.

“Although gene-environment interactions are widely believed to contribute to autism risk, this is the first demonstration of a specific interaction between a well-established genetic risk factor and an environmental factor that independently contribute to autism risk,” said Daniel B. Campbell, Ph.D., the study’s senior author.

...
Children who had the altered MET gene and lived in high pollution areas, had triple the risk for autism than children who had neither of the risk factors.

The research paper, “Autism spectrum disorder: Interaction of air pollution with the MET receptor tyrosine kinase gene,” will be published in the journal Epidemiology in January.

KanCare

Kaiser Health News reports on a change that it coming to Kansas in January.

That’s when Kansas’ Medicaid managed care system — called KanCare — will take charge of all home and community-based services for about 8,500 people with developmental disabilities, most of them adults. What concerns families and advocates the most is that the three for-profit national insurance companies that run KanCare will be responsible for a statewide program that they’ve never managed in Kansas or elsewhere. They’re also worried that the need to make a profit ultimately will destroy a system families and advocates think works well.

While Kansas will become the first state to make such a leap, it is being watched closely elsewhere, as at least two other states — Louisiana and New Hampshire — are considering moving in the same direction.

...

By next year, more than two dozen states are expected to have set up programs to transfer frail elderly, mentally ill or individuals with physically disabilities into managed care for home and community-based services. But in most states, those with developmental disabilities — people with impairments such as cerebral palsy, Down syndrome and autism — have been excluded from managed care for these services because their needs are so specialized.

...
“There is a great deal of fear in the community that these big private health plans don’t know much about this population,” said Maureen Fitzgerald, disability rights director for The Arc, a national advocacy organization for those with developmentally disabilities. “These are such vulnerable people. Mistakes that are just inconvenient to some can be devastating to them. If the home care person doesn’t show up, you could be lying in your bed all day. It’s kind of scary.”

Only a handful of states, including Michigan and Vermont, have moved individuals with developmental disabilities into managed care for long-term services. They’ve mostly relied on existing networks of community-based nonprofits or county agencies or have made themselves the managed care organization. None has turned exclusively to national managed care companies.

The Kansas City Star reports on a federal panel asking why Kansans with developmental disabilities no longer get services for which they previously qualified.

Members of the National Council on Disability pointedly put that question to Shawn Sullivan, director of the Kansas Department for Aging and Disability Services, and Susan Mosier, state Medicaid director. The council, appointed by the president to advise his administration and Congress on national disability policy, has held two days of hearings in Topeka this week.

It spent almost all of Thursday focused on KanCare, the state’s new managed-care program for the poor and disabled.

Working through three private-sector insurance companies, KanCare has been managing medical care since Jan. 1. Next month, it’s scheduled to take over management of daily living services for the developmentally disabled.

Disability council member Gary Blumenthal, a former Kansas legislator and social services official, continuously pressed to know how the previous government-run Medicaid system could decide that a disabled person needed 24/7 attendant care, while KanCare thinks the same person can get by with about 40 attendant hours a week.

Blumenthal also questioned whether the managed-care system is using a lower set of standards to make such quality-of-care decisions. Sullivan replied that the standards are the same.

“The difference is pre-KanCare, those weren’t always followed and post-KanCare, they are,” Sullivan said.

Delay and Deny: Special Education in the Bay Area

KNTV reports that school districts often try to deny special education services in the Bay Area:

There’s disagreements between families and school districts, and less than 1 percent of families request a due process hearing, and only 3 percent of them actually go to the hearing,” parent advocate Ann McDonald-Cacho said, citing CLA [California Legislative Analyst] statistics. “The numbers show that most families…don’t have the resources, they don’t know where to find a lawyer, they don’t know how they could possibly hire a lawyer in order to work out these disagreements,” McDonald-Cacho said.

McDonald-Cacho works at the Disability Rights and Education Defense Fund (DREDF), an organization founded to help families navigate the school system to get the education their children are entitled to.

...

The NBC Bay Area Investigative Unit requested records showing the amount of money spent on outside attorneys from 2010 to May 2013 for the three Bay Area districts with the most special education cases: Oakland Unified, San Jose Unified and San Francisco Unified.

The reports show Oakland Unified spent more than $850,000, San Jose Unified spent more than $551,000 and San Francisco spent more than $440,000 on outside counsel to deal with special education lawsuits.

Compare that to the roughly $22,300 a year it costs to educate a special needs student. The districts could have provided services to 83 students in that time period.

...

Sunnyvale mom Nancy Agaiby is just beginning her journey, getting ready to enter a due process hearing with the Sunnyvale Unified School District. Her 6-year-old son Andrew was diagnosed with ADHD, but Agaiby said she has spent the past school year trying to reach an agreement with the district about an appropriate education plan for her son.

“They’re not fighting to save money, they’re fighting a 6-year-old,” Nancy told NBC Bay Area. “One of the staff (members) told me this is protocol, to get turned down over and over until finally they allow you in.”

CEC Survey on Special Education

A release from the Council for Exceptional Children:

Recent budget cuts at the federal, state and local levels are impacting the delivery of special education services for students with disabilities, according to a new survey conducted by the Council for Exceptional Children (CEC) and the National Coalition of Personnel Shortages in Special Education and Related Services (NCPSSERS).

The survey of more than 1,000 special education professionals, including special education teachers and special education administrators from all 50 states, shows that the impact of federal, state and local budget cuts on special education is most evident in an increase in caseload and class size; lack of funding to purchase resources such as assistive technology; and reduced professional development opportunities.
 ...

The CEC/NCPSSERS survey shows that:

•  94% of respondents state that their school district has been impacted by budget cuts over the last year. 
•  83% of respondents state that budget cuts have already impacted the delivery of special education services. 
•  82% of respondents state that there are ‘too few personnel to meet the needs of students with disabilities’ in their school district. 
•  78% of respondents state that budget cuts have resulted in an increase in caseload. 
•  61% of respondents state that budget cuts have resulted in an increase in class size. 
•  61% of respondents state that they work in a high-poverty school/district receiving Title I assistance; 
•  43% of respondents state that budget cuts over the last year have been a combination of sequestration and state/local funding cuts. 
•  40% of respondents say that budget cuts have led to unfilled vacancies of school personnel and 
• nearly one-third report layoffs of specialized instructional support personnel and teachers. 

The Divorce Myth

People such as Jenny McCarthy have spread the myth that parents of autistic children have a high divorce rate. In an editorial, Autism sums up the evidence:

Naseef and Freedman (2012) addressed this issue with sensitivity and clarity in the Autism Advocate. They describe the urban legend that the divorce rate among parents of children with autism is 80%, a statistic earnestly quoted by many talk show hosts and celebrities in the United States. Naseef and Freedman point out that having a child with autism can increase parents’ stress relative to parents of typically developing children, and can strain parents’ relationship with each other. This can be a product of changing expectations regarding the care and development of the child with autism, the child’s difficult-to-manage behavior, juggling often hectic therapy schedules, financial challenges, and battling with schools and insurance companies to obtain appropriate care. In the face of these challenges, and a national divorce rate of 40% to 50%, it’s no wonder that people assume a much higher rate of divorce among parents of children with autism.

Carefully conducted research does not bear out this statistic, however. As early as1951, Kanner remarked on the low incidence of divorce among the families of children with autism he had seen. Freedman and colleagues (2012) used data from a national survey to estimate that 64% of children with autism reside in two-parent households, a percentage no different from that of typically developing children. Because of the way the survey questions were asked, however, they were not able to ascertain the exact divorce rate. Hartley and colleagues (2010) found, in a smaller convenience sample, that 23.5% of parents of children with autism divorced, compared with 13.8% of typically developing children, with the difference between the two groups appearing among parents of children older than 10 years, but not before. Still, the divorce rate among parents of children with autism in this sample was substantially lower than the national average.

Exceptional Minds and Employment

Many posts have discussed employment of ASD adults.  At The Los Angeles Daily News, Christina Villacorte profiles Lloyd Hackl, a participant in Exceptional Minds, a Sherman Oaks nonprofit vocational center and animation studio.

.“You can’t judge them by the way they look or by the way they talk,” said Yudi Bennett, the school’s operations director. “Somebody on the outside looking at Lloyd would only see the limitations. We see the potential.”
...
“(Those with autism) have high attention to detail, and that’s a trait we’re trying to capitalize on,” said the school’s program director, Ernie Merlán. “I call it their superpower.”

For “American Hustle,” the students did rotoscoping, a tedious animation technique necessary for color correction, and computer effects such as making superheroes fly by erasing the wires that hold them up. When asked if he enjoys the precise art of rotoscoping, Katz, 22, responded with an emphatic “yeah!”

...

Exceptional Minds’ lead instructor, Josh Dagg, said nothing compares to helping students with autism feel the sense of accomplishment that comes with making a living. “I know that the program is working because we’ve been able to teach them to deliver on a professional level — on a level that can be blown up to 30-60 feet high and shown globally,” he said. “If their work is good enough for that, then it’s good enough for anybody.”

...

“Exceptional Minds started with a group of parents trying to figure out what was going to happen to our kids after high school,” Yudi said, adding the unemployment rate among those with autism is about 90 percent. [Maybe not quite that high, but still bad]

The school allows students to earn certification in post-production work by providing customized instruction, hands-on training, expert lectures and field trips to various studios.

IEPs and Discipline in New York Schools

Avonte Oquendo is still missing from the Riverview School in Long Island City, Queens. At Al Jazeera America, Rebecca White reports:

“School safety officers do not have any knowledge of whether a student has an IEP,” said Johanna Miller, advocacy director at the New York Civil Liberties Union. “We don’t advocate that the DOE shares these records with the cops, but there’s a gap in how the adults in the building can protect students with special education needs.”

Miller said another issue at hand is the high disciplinary rates for students with special needs.
The NYCLU has done comprehensive reporting using statistics obtained from the DOE, through Freedom of Information Act requests, and independent agencies.

“The most blunt statistic is that students with IEPs are suspended twice as often as general education students,” Miller said. “Black students with IEPs represent 14 percent of suspensions and only 6 percent of enrollment.”

The city’s reform initiative lists 13 IEP-classifiable disabilities, including deafness, emotional disturbance, learning disabilities and autism. The IEPs — which are assessed by an IEP team, the teacher, the student’s parent, and any related service provider — are readdressed at least once a year.

“Many types of misbehaviors can result in a zero-tolerance response, meaning the student is actually pushed out of the system rather than disciplined within the educational system,” Miller said of the suspensions. She added that, since 2011, the DOE has been required to provide data on suspensions and arrests twice a year, and the NYPD to provide numbers four times a year. The NYPD did not respond to requests for comment.