Social Blindness App

A project is under way to help adults on the spectrum with social skills. People could us it at home on computers or tablets:  it uses video-modeling to explain social situations where ASD people may not interpret it the same way as NT people. It walks them through body language gestures, mirroring exercises, quizzes, and more.  More here:

http://www.kickstarter.com/projects/jmitchell/social-blindness-app-for-aspergers-and-autism

Abuse in Antioch, California

As many posts have indicated, abuse cases are all too common. In California, The Contra Costa Times reports:

Two weeks after her autistic son came home with bruises on his neck and face, allegedly at the hands of his teacher, a frustrated Michele Smith complained to Antioch's top two special education administrators.

She says she received a stunning response: They asked her not to call police.

"They just wanted to sweep it under the carpet," Smith said in an interview.

That Dec. 10 conference call is one of the most incendiary revelations in an abuse scandal that has entangled the Antioch Unified School District since the filing of a federal lawsuit last week. Along with the suit filed by three families, lawyers released an email from Antioch special education director David Wax in which he tells colleagues he "de-escalated" Smith during the call, convincing her not to report the allegations against Mno Grant Elementary teacher Theresa Allen-Caulboy to police or the media.

This week, Smith described her end of the conversation to this newspaper.

"They said, 'We can handle it, you don't have to go make police reports,'" Smith said. "I don't trust them at all. They failed my child."

Administrators launched an internal investigation, as they told Smith they would, but did not report the suspicions of abuse to police or Child Protective Services as the law requires. But they failed to contain the scandal: Smith ignored Wax's request and went to police the same day.

Last week, KGO-TV reported:

The California Mandate and Co-Payments

The Santa Cruz Sentinel reports on implementation of the California mandate:

A January 2012 survey of 1,400 families by the California Autism Society found insurers paid for 13 percent of autism therapies, regional centers, 22 percent, school districts, 48 percent and private payers, 17 percent.

SB 946 was expected to save the Regional Center system $80 million in a year, according to San Andreas Regional Center chief Santi Rogers, who sent parents a letter in July advising them to contact their health insurance provider and request funding for behavioral health services.

For some families, co-pays could total $400 to $500, and pose a financial barrier to a treatment that has been effective.

Most of the 21 regional centers in California were covering co-pays, but six were not, according to Scotts Valley resident Peter McLean, who has a son, 16, with autism and serves on the Area VII board. San Andreas Regional Center, one of the six, posted a statement to that effect on its website.

TV Coverage of Michigan Blues Case

WOOD-TV in Grand Rapids reports on the federal case involving Blue Cross/Blue Shield in Michigan:

Judge: BCBS must pay for autism therapy

Study of Respite Care

Amber Harper and colleagues have a new study of respite care in the Journal of Autism and Developmental Disorders.  The abstract:

Parents of children with autism spectrum disorders (ASD) are at risk for having higher stress and lower marital quality than other parents. Survey data regarding respite care, marital quality, and daily hassles and uplifts were obtained from 101 mother-father dyads who were together raising at least one child with ASD (total # of children = 118). Number of hours of respite care was positively related to improved marital quality for both husbands and wives, such that a 1-h increase in weekly respite care was associated with a one-half standard deviation increase in marital quality. This relationship was significantly mediated by perceived daily stresses and uplifts in both husbands and wives. More respite care was associated with increased uplifts and reduced stress; increased uplifts were associated with improved marital quality; and more stress was associated with reduced marital quality. The number of children in the family was associated with greater stress, and reduced relational quality and daily uplifts. Results suggest policymakers and practitioners should develop supports for providing respite for families raising children with ASD.

From the article:

The findings of this study are relevant for policymakers, practitioners, and families of children with ASD. Policies that encourage broad accessibility of flexible, responsive, and compassionate respite care are warranted (Oliver and Mossialos 2004; Sawyer et al. 2010). Such policies should ensure equality of access to care regardless of the specific diagnosis, age, or behavioral challenges of the child or the socio-economic status, geographic location, or awareness of respite care availability of the family (Doig et al. 2009; Oliver and Mossialos 2004). Many parents are unaware of the options available. As one parent stated in a previous
study (Dillenburger et al. 2010, p. 18): ‘‘If we don’t know the questions to ask [about available services], then we don’t get any answers. Social services should be called secret services.’’ Targeting widespread media attention to the availability of respite care is recommended. [emphasis added]

Dillenburger, K., Keenan, M., Doherty, A., Byrne, T., & Gallagher, S. (2010). Living with children diagnosed with autistic spectrum disorder: Parental and professional views. British Journal of Special Education, 37, 13–23. 

Doig, J. L., McLennan, J. D., & Urichuk, L. (2009). ‘Jumping through hoops’: Parents’ experiences with seeking respite care for children with special needs. Child: Care Health and Development, 35, 234–242.

Oliver, A., & Mossialos, E. (2004). Equity of access to health care: Outlining the foundations for action. Journal of Epidemiology and Community Health, 58, 655–658.

Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Harchak, T. F., & Martin, J. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40, 620–628.

New Law in New Mexico

A Friday release from the Governor of New Mexico:

Governor Susana Martinez announced today that she has signed House Bill 22, expanding coverage under the Health Care Purchasing Act (HPCA) to include treatment of Autism Spectrum Disorder. Any healthcare plan covered under the HCPA will be required to cover the diagnosis and treatment of autism. The HCPA covers school employees, state and local employees, and certain retirees.

“Autism not only affects those individuals living with it, but it also has an impact on their families and loved ones,” said Governor Martinez. “This bill will provide some measure of relief to autistic New Mexicans and their families by expanding many health insurance plans to include Autism Spectrum Disorder.”

In 2009, the New Mexico Legislature passed a bill that mandated autism coverage for children in group healthcare plans. However, that law only applied to commercial, private insurance and included a massive loophole that left thousands of public employees – including state employees, municipal employees, and public school teachers – without much-needed autism coverage.

“Caring for a child with autism is an expensive challenge without the right health care coverage,” said Shawna Childress, a teacher at East Mountain High School in Albuquerque. Shawna approached a fellow East Mountain teacher, Representative Jim Smith, about closing the loophole that denied autism coverage to public employees. “This law is a tremendous help and I’m grateful that Governor Martinez and Representative Smith responded to parents like me who are raising an autistic child.”

Robison on Autism and Violence

At CNN, John Robison has an essay on the purported connection of autism and violence:

The truth is, people with autism are far more likely to be victims of violence than perpetrators. Even in our supposedly enlightened society, anyone who is different can become a magnet for bullies and predators. Growing up with undiagnosed Asperger's, I learned that the hard way. So did my son, Jack (I call him Cubby), who also has Asperger's. I'd sensed that all my life, but it's also supported by scientific studies, in both medical and criminal justice research.

Sanjay Gupta has a video essay on Asperger's Syndrome

Wakefield Pitches Reality TV Show

Andrew Wakefield, who launched the vaccine theory and later lost his medical license for faking his results, has been pitching a reality TV show about autism. In the UK, The Guardian reports:

For three days at the end of January, the Renaissance hotel in Washington DC fills up with television executives from around the world.The Realscreen Summit is where the makers of reality TV gather to discuss ideas, negotiate deals and discover the next Apprentice or I'm A Celebrity. Among the estimated 2,200 people who had paid up to $1,600 (£1,050) this year to try to snag face time with an exec from Freemantle, TLC, Discovery or National Geographic was an Englishman in his mid-50s wearing jeans, a crisp, white shirt and loafers, and carrying a MacBook. On his badge were the words "Autism Team".

This man's pitch was a reality TV series about autism, and he hada short trailer on his laptop: an autistic child screams; another bites his mother's hand; another repeatedly and violently slams a book against his head. Then a narrator tells us that "every day across the world, medical symptoms of hundreds of thousands of people with autism are being ignored". Cue piano music and the titles, The Autism Team: Changing Lives.
...
The man in the white shirt and jeans punting the prospective TV series that day was Andrew Wakefield, coauthor of a now notorious 1998 study, published in the Lancet, that suggested a possible link between autism, gastrointestinal disease (it was Wakefield who coined the term "autistic enterocolitis", which Krigsman diagnoses in the Autism Team trailer), and the measles, mumps and rubella (MMR) vaccine. Afterwards, Wakefield called for the suspension of the triple jab, which caused widespread panic and is said by his critics to have resulted in a drop in the number of parents choosing to vaccinate their children. Cases of measles rose from 56 in 1998 to nearly 1,400 in 2008. In 2006, a 13-year-old boy became the first person in more than a decade to die of the disease in Britain.

"Outgrowing" Autism? More Misreporting of the Optimal Outcomes Study

Previous posts discussed news reports of a study on optimal outcomes, noting that they tended to suggest that kids with ASD can simply "outgrow" it.  Another such report has appeared on KABC in Los Angeles:

Autism is thought to be a lifelong disorder but new research produced some interesting results.

A small study suggests that some people diagnosed with autism can possibly outgrow it. The findings have got some experts changing the way they think about autism.
Jack's mom Leslie Griggs knew something was different about her son Jack.

"He wasn't making a lot of eye contact. He didn't have any words," Griggs said.
Jack has autism. Leslie says daily therapy sessions have made all the difference for him.

"He seems like he's more aware of us being in his world," Griggs said. "He's not in his own little world anymore."

While Jack has shown big improvements, a University of Connecticut study suggests some kids may actually outgrow the disorder.

One more time: The study does not use terms such as "outgrow" or "grow out of," which would suggest that the process is automatic, like losing baby teeth. The New York Times quotes lead author Deborah Fein:

Dr. Fein emphasized the importance of behavioral therapy. “These people did not just grow out of their autism,” she said. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.” [emphasis added]

Scarborough Strikes Again

Joe Scarborough is at it again, with another comment about ASD.  Tommy Christopher writes at Mediaite:

Joe Scarborough, who is, himself, the parent of a child with Asperger’s Syndrome, infuriated Autism advocates and other thinking people when, in the days following the devastating massacre in Aurora, Co., revealed that whenever one of these things happens, the first thing he thinks of is Autism. “You have these people that are somewhere, I believe, probably on the autism scale, I don’t know if that’s the case here, but it happens more often than not,” Scarborough said, despite the fact that no evidence exists to support that statement, and evidence suggests, instead, that developmentally disabled people are far more likely to be victims of violent crime than perpetrators of it, and their attackers are overwhelmingly neuro-typicals like Joe Scarborough.

That was before the massacre at Sandy Hook Elementary School, which also touched off a flurry ofirresponsible reporting on ASDs, aided by the fact that the Newtown shooter apparently had Asperger’s Syndrome. Again, there is no evidence whatsoever that this contributed, in any way, to his crime, but the media has continued to focus on it anyway. It doesn’t help that law enforcement sources have consistently been leaking information, and highlighting evidence, about the shooter’s ASD, while ignoring the co-pathologies he was alleged to have had. If it’s ever actually confirmed that the Newtown shooter had an ASD (so far, the information has been gleaned through leaks,secondhand sources, and books found in the home), he would be the first.

That fact, however, didn’t stop Joe Scarborough from pre-judging the Newtown shooting, as he revealed Friday morning. “The second Mika and I heard the news that there was a shooting in Connecticut,” Scarborough said, “I said, ‘you watch. This kid is going to have a certain condition, I won’t say it here on the air because people will kill me for saying it.”

"The Story of Luke"

A number of posts have discussed the portrayal of ASD in popular culture.  "The Story of Luke" is a new movie about an autistic adult.  Variety reports:

“I wanted something entertaining that’s not too heavy so the movie has comedic and romantic elements,” said scribe-helmer Alonso Mayo. “Too many movies have the hard drama on this topic and are very depressing. In my experience, I saw a lot of hope, laughter and happiness. I wanted people to see a side they haven’t seen before. It’s not just something to be scared about.”

Even though Lou Taylor Pucci’s character shares the same disorder as Dustin Hoffman’s in “Rain Man,” Pucci took a different approach.

“The generalities are all there,” he explained, “their inability to focus, their repetition of ritual. But I needed to create a totally fictional character out of nowhere. What it ended up being was a morph of four different families with an autism member I had met who helped create somebody just for me to play.”

Sheltered Workshops in Oregon

The Oregonian reports:

Oregon unlawfully segregates people with disabilities in sheltered workshops instead of providing them more work opportunities in the public midst, federal authorities allege.

In a news conference Monday, officials with the U.S. Justice Department said they have joined a class-action lawsuit filed by people with disabilities against Gov. John Kitzhaber and the state of Oregon last year, demanding changes to the sheltered workshop system
...


Lane v. Kitzhaber was so named because it pits Paula Lane, who earned as little as 40 cents an hour in a sheltered workshop in Beaverton, against Gov. John Kitzhaber as Oregon's chief executive. The lawsuit aims to provide workshop laborers such as Lane, who has multiple disabilities including autism, with job coaches and other professional supports so that they can work at regular jobs in the public midst, said Bob Joondeph, executive director of Disability Rights Oregon.

As it stands, he said, the majority of working Oregonians with serious disabilities find themselves segregated into workshop settings. They often toil in jobs for nonprofits that pay poorly and sometimes give participants practice work when there are no jobs for them to do.
Oregon has not developed adequate services to offer people a chance to work outside the workshops, Joondeph said.

"A person cannot choose to use a service," he said, "that is not made available to them."

The President, Brain Research, and World Autism Awareness Day

At the White House blog, presidential adviser Valerie Jarrett writes of brain research:

Today marks World Autism Awareness Day, and it was filled with events, meetings, and information campaigns here at the White House, across the Obama Administration, and across the country. 

It was fitting that President Obama unveiled a bold new research initiative designed to revolutionize our understanding of the human brain. The BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative will be essential to advancing what we know about the complexities of autism. Originally referenced during the State of the Union, this ambitious new project was launched with approximately $100 million in the President’s Fiscal Year 2014 Budget, and ultimately aims to help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and autism. 

As President Obama said today: “We’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke. And the most powerful computer in the world isn’t nearly as intuitive as the one we’re born with. So there is this enormous mystery waiting to be unlocked, and the BRAIN Initiative will change that by giving scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think and how we learn and how we remember. And that knowledge could be -- will be -- transformative.”

As with Tom Cole's comment, self-advocates might take exception to the characterization of autism as a "disease."