Ohio Lawsuit Update

A previous post discussed a lawsuit in Ohio.  The Cincinnati Enquirer reports:

A federal judge ordered state officials on Wednesday to provide speech therapy and other care to an autistic boy in Clermont County who has gone without those services for more than four months.

The judge stopped short, however, of a more sweeping order that the boy’s parents say is needed to get crucial, comprehensive care to their son and other autistic children across Ohio.

The order by U.S. District Court Judge Michael Barrett comes about two weeks after Holly and Robert Young sued the Ohio Department of Health, claiming the state has denied their 2-year-old son, Roman, the therapy he needs to one day become self-sufficient.

...
Barrett ordered the state to resume the basic services immediately. He also said he would consider the Youngs’ demand for the more intensive therapy, which would involve about 40 hours a week of one-on-one work with a therapist at a cost of about $2,750 a week.

...
 The state’s lawyers said the therapy still is not widely accepted for use in young children. They also said the responsibility for providing care would shift from the state to local schools after Roman’s third birthday, which is Jan. 20.

Parents, Facebook, and Community

The Connecticut tragedy has prompted members of the community to join together and push back on the speculation that autism had anything to do with it.

At The Connor Chronicles, Flannery Sullivan writes:

After the horrific events that took place at Sandy Hook Elementary, news reports and articles were seen everywhere, and a great many, in their haste to report something, indicated that the shooter was autistic, specifically, a person with Asperger’s. That reporting set off a nightmarish chain of events in which ill-informed people, believing that autism could be attributed to planned violence, made hateful comments and put up Facebook pages calling for extermination of autistics.
...


Others started sharing pictures of their loved ones, with meaningful descriptions. Someone had an idea to put all the pictures in one place. Tim Tucker, from Both Hands and a Flashlight, had a FB page that was empty, waiting to be used. He offered up the page, as well as worked to create a website, and Autism Shines was born.

We couldn’t believe how quickly it grew. Although it was created just a couple of days before Christmas, the FB page acquired 2,000 fans in less than 48 hours, and amassed a few hundred photos. The website is now operational, and is gaining in popularity as well.

At Parents, a post by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

Last Saturday when I woke up and checked my Facebook, I noticed my feed was full of friends (mostly autism parents) sharing all these beautiful photos of kids, teenagers, adults. All the photos had some kind of personal message about the person in the photo. All the photos were shared from a page called Autism Shines - a page created by autism parents.

In reading the messages, I was so moved. Not only by the messages on the photos but by the amount of shares, likes and comments of support. One mother showed the page to her son and he said, “I used to think I was the only autistic kid on earth. Then I realized there were others like me. I think there are some kids who don’t know they aren’t alone, but now they will know.”

In their effort to “show the world all the positive attributes of autism,” The Autism Shines Facebook Page welcomes anyone to “upload your photo of someone you love with autism, or yourself, and caption it with something great about them.”

When I uploaded my photo of Norrin, the page had about 200 ‘likes.’ By the end of the same day – it had a little more than 1500 and the number keeps growing (it’s close to 3000 now). This is the power of community. This is autism awareness at its best.

Insurance Day in Alaska

Previous posts discussed the mandate bill in Alaska. The Associated Press reports that its insurance provisions take effect today.

One of the new laws set to take effect in Alaska will require health insurance policies to cover treatment of autism spectrum disorders... A part of the autism bill took effect earlier, establishing a task force to study issues such as the state providing insurance coverage for the disorder.
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Some insurance companies opposed the measure, saying it was unfair to put the burden on private companies.

However, Amy Carter, a spokeswoman for Premera Blue Cross Blue Shield, recently said the insurer expects rates to rise at a lower level than initially predicted.

Sen. Johnny Ellis, D-Anchorage, a primary sponsor of the Senate bill, said in an email that "the state has consistently adopted state-mandated coverage as part of its standard health plan for state employees," even though there was no requirement to do so.

"This has held true for coverage of breast cancer, prostate cancer screenings, well-baby exams and numerous other medical conditions," he said. "Insurance coverage for autism should be no different, and I would expect and hope this happens after the next round of labor contract negotiations."

Rachel Kenyon

Rachel Kenyon, the autism mom whose appeal to Rep. John Larson (D-CT) led to the TRICARE amendment, is the American Military Families Autism Support person of the year:

The Shooting: Reactions Continue

The purported link between ASD and the tragedy in Newtown keeps inspiring pushback.

Connecticut's medical examiner has asked scientists to study Lanza's DNA even though there is little reason to believe it will yield useful information.  Business Insider reports:

So far, the strongest evidence that genetics play a role in violent behavior comes out of research on MAOA, a gene that produces a substance called monoamine oxidase. Studies from the early '90s showed that abused children with certain variations of this gene had problems regulating their aggressive impulses. But University of Pennsylvania criminologist Adrian Raine questions how crucial MAOA is in determining who actually becomes violent. University of California San Francisco geneticist Robert Nussbaum also worries about the potential for genetic discrimination:

It’s a shot in the dark that’s unlikely to show anything. If they find something associated with autism, I’m afraid that it might have the effect of stigmatizing autistic people. I can see a whole morass coming out of this

.Richard Farley writes at The Daily Beast that the linkage could hamper efforts to secure employment for people on the spectrum:

“Shooter Reportedly Had Autism.” As soon as it scrolled beneath the “Breaking News” banner on television, I knew our work had just gotten quite a bit harder. At Birch Family Services, where I serve on the board of directors, we have spent the better part of the last year trying to develop partnerships with financial services companies and others to employ—even for no pay—higher-functioning young people with autism spectrum disorders (ASDs), including Asperger’s syndrome (AS). It is, even in the best of times, a tough sell, and even before the Newtown shooting, these were not the best of times. Financial firms are downsizing, and employees with ASDs have special needs. Usually these needs are not much more than tolerance and understanding of social deficits that often make their interactions with us a bit odd and uncomfortable until we get familiar with them. “Is he dangerous?” was not a question we had addressed in the PowerPoint slide deck we pitch employers with.

Jo Ashline writes at The Orange County Register:

This is my son Andrew. He loves the ocean, bounce houses, garbage trucks and his brother Ian. He's been known to say "Yay," "Woohoo," and "Whee" in the same sentence. He's taught me more about life and love than I ever thought possible. This is autism.

This is the first time I'm truly afraid for him.

Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.

 I have felt a palpable shift in the air toward people with autism on the heels of the tragic events in Newtown – especially since news reports began to surface irresponsibly linking the shooter's possible Asperger's diagnosis with the horrendous acts he committed that fateful day.

Unfortunately, many people choose to let the media do the thinking for them, and this means a lot of misguided individuals will now consider my son – and others like him – as a threat to their safety.

From The Stamford Advocate:

Andrea Leonardi, director of special education and pupil services in Fairfield, also worries about the fallout. She said, though her district's major goal in light of the shooting has been ensuring the safety of students, she's also been concerned about the negative image being portrayed of those with special needs.

"We're concerned about students with Asperger's who might be thinking `What does this mean about me?' " Leonardi said. 

From The Maine Sunday Telegram:

Peggy Schick of Topsham was furious when she heard early news reports describing the Connecticut school shooter as having Asperger's syndrome.

"It made me sick as soon as I heard it," said Schick, whose 16-year-old son was diagnosed with Asperger's, a mild form of autism. "People who aren't informed about autism are thinking, 'Oh! That's it! That's why this happened.' (But) it's like saying 'He was tall,' or 'He had red hair.' It's an irresponsible, uninformed response.

...
 Schick said she worries that her son will take away the wrong message from the shooting stories.

"It makes me worry that he's going to think that he's more prone to violence," Schick said. "He has enough to contend with, and now he has this to contend with?"

Ohio Lawsuit on Early Intervention

AP reports:

The parents of an autistic toddler are suing the state Department of Health and others, alleging denial of federally mandated treatment. The case could affect how other autistic children are cared for in the state.

The lawsuit, filed last week in federal court in Cincinnati, accuses the state of discriminating against children with autism and their parents by failing to provide a type of intensive treatment known as applied behavioral analysis.

The lawsuit was filed by Robert and Holly Young, of Williamsburg, about 25 miles east of Cincinnati. The Youngs’ 2-year-old son, Roman, was diagnosed with moderate to severe autism a year and a half ago.

“It’s been a living nightmare,” said Holly Young, a Miami Township police officer. “It’s heart-wrenching to know what you need to give your son and you can’t provide it, and no one will help. And the people who are supposed to help seem to be turning their backs.”

Under the Individuals with Disabilities [Education] Act, states are required to provide early-intervention services for children with autism, a developmental disorder characterized by difficulties communicating, emotional detachment and excessively rigid or repetitive behavior, among other symptoms. States get federal money to provide the treatment, with the goal of turning children with autism into self-sufficient adults who won’t have to depend on public resources.

The Cincinnati Enquirer reports:

Ohio Gov. John Kasich addressed the importance of early intervention in autism cases Friday when he said it soon will be required in state employee health insurance plans, private insurance plans and insurance sold through the upcoming federal insurance exchanges. 

"When we have the chance to do the right thing, we better do it," Kasich said. "Helping kids with autism get the services they need, and helping their parents get the financial lifeline of insurance coverage, that's something I support."

Kasich's plan, however, would not make autism services mandatory until 2014, which Ganulin said is too late to get Roman the immediate help he needs.

He said the federal lawsuit is an attempt to get help now, while the treatment still has the best chance to do the most good. Judge Michael Barrett will hear arguments Jan. 2 about whether he should require the state to take action.

The lawsuit says the state's handling of Roman's case violates his constitutional rights and several federal laws covering the care and treatment of people with disabilities.

Young said she went to court because she was out of options. She said she's seen first-hand what intensive therapy can do for her son, and she knows he's suffering without it.
"I can't afford to give him what he needs," she said. "It's excruciating for me.

Abuse and Death in Southern California

As many posts have shown, people on the spectrum can be vulnerable to abuse by those who should be caring for them. In San Diego, KNSD reports:

The mother of a severely autistic man gave an emotional testimony Thursday at a hearing in Vista for two caregivers accused of abusing her son.

Police say 50-year-old Michael Garritson and 27-year-old Matthew McDuffie were supposed to be caring for 23-year-old Jamie Oakley, a man with severe autism who can't verbally communicate, has to wear a diaper and tends to injure himself when he's distressed.

Kim Oakley said the caregivers were well aware of the fact that a camera was in her son's room and that she installed a motion operated camera before going on an overseas trip that spanned several weeks.
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Oakley says the video shows both McDuffy and Garritson kneeing and hitting him, twisting his arms, and poking him in the eye to the point where it became infected.
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A judge has yet to decide if enough evidence was presented for the defendants to stand trial. Both defendants have pleaded not guilty to their charges.

Sometimes, family members murder ASD children.  In San Diego, KGTV reports:

A woman who drowned her 4-year-old autistic son in a bathtub, then drove his lifeless body to a police substation where she admitted the crime, pleaded guilty Thursday to second-degree murder.

Patricia Corby, 37, sobbed as she admitted killing her son, Daniel, last March 31.
She will be sentenced to 15 years to life in prison on Jan. 28.

Popular Culture and the Spectrum

Previous posts have discussed depictions of ASD in television, movies, and novels.  The Canadian Press reports:

... Autism Speaks executive vice-president of programs and services Peter Bell emphasizes that autism is a spectrum disorder that takes many distinct forms. At one end, there are some highly functioning, independent people who can resemble those being depicted on TV. At the other end, there are people with much more significant challenges, some of whom need 'round-the-clock supervision. 

Bell points out that roughly 40 to 50 per cent of the autistic population has communication challenges so significant many are largely non-verbal, and that population is hardly represented on TV at all. ("Touch" casts Toronto's Kiefer Sutherland as the father to a mute son but doesn't diagnose the child). 

"It does run the risk of stereotyping what autism might look like," said Bell, an avowed "Parenthood" fan who even had a cameo on the show. 

"Because I think for the vast majority of people who live with autism, they do have very significant challenges that probably wouldn't play well on the screen."

Tom Angleberger is author of the Origami Yoda  books, a wonderful series of novels for older children.  In an interview with Monica Friedman, Angleberger says that he is on the spectrum, as is the central character of the books, Dwight Tharp.

Tom Angleberger: In many ways I feel like the kids that read the book are understanding Dwight, even if they don’t realize exactly what his condition is. In fact, a lot of kids identify with Dwight, rather than Tommy, which really pleases me.

It is a bit frustrating when a reviewer thinks the book was fluff, when in fact it is my heart and mind laid out for all to see. (But maybe my heart and mind are fluffy.) 

MF: Thirty years ago, there was no such thing as ASD: a kid was either too “special” for mainstream or else just weird. How does an Asperger’s diagnosis change things for weird kids like Dwight? How would you project his long-term prognosis? 

TA: Well, Dwight has NOT been diagnosed in the story. Not yet, at least. I know that he’s an Aspie, just like I know I am. But neither of us has been officially diagnosed.

Long-term...Dwight is awesome and will be just fine...unless Harvey and Darth Paper foul things up.

Autism Science Digest

Previous posts have discussed alternative medicine and organizations that support it. At Left Brain/Right Brain, Matt Carey writes:

Autism Science Digest was an effort by AutismOne to publish their take on autism science in a magazine format for a general audience. AutismOne is best known for their annual parent convention which focused largely on alternative medicine and vaccine causation.
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That all said, while perusing the AutismOne website I noted that the cover for their “Autism Science Digest” hadn’t changed since my last visit. That was some time ago. The cover informs readers about the then upcoming 2012 AutismOne convention (last April), so my interest was piqued and I checked the page for the “Digest” and found this announcement: Autism Science Digest is temporarily unavailable. 

One is left wondering how “temporary” temporary is in this case. Autism Science Digest was launched in August 2011 so the lifespan (should temporary=permanent) seems a bit short.

Reverberations of the Shooting

In Hanover, PA, The Evening Sun reports:

Days after the Connecticut shooting, Jami Gladfelter said, a stranger approached her friend and asked how she felt raising a mass murderer 

he mom was wearing an autism ribbon, a multicolored pattern of puzzle pieces, that aims to raise awareness of the developmental disorders on the spectrum. 

...

Glatfelter, who has a 12-year-old son with autism, said many people don't understand the disorder and so stating that Lanza had Asperger's only creates more misconceptions.

"You're sort of pigeonholing this population, and you don't know anything about them," the Shrewsbury resident said.

The San Jose Mercury News reports;

 Like millions of people, Paul Bondonno searched in vain for an explanation for the deadly shooting at Sandy Hook Elementary School. But when early reports noted the gunman had Asperger's syndrome, the 34-year-old bolted into hyper-driven self-defense, and he hasn't stopped since. 

 "We don't want Adam Lanza to be our poster boy," Bondonno said at the Coffee Society in Campbell.  

The cafe is usually busy on weekends, but a pelting rain Sunday morning kept the crowd and noise down, a perfect setting for separating the facts of a mysterious disorder from the debate over guns, massacres and mental illness. A 13-year-old girl with Asperger's, Puja Uppalapati, and her father, joined the conversation as well.  

"It irritated me," Puja said about the initial Lanza-Asperger's connection. "I was like, why are you saying this? Is this what people will think of us?"

What might also irritate self-advocates is the online headline of the story:

Asperger's sufferers fear Adam Lanza will become their poster boy

Do not blame the reporter:  the word sufferers does not appear in the body of the story.  Journalists typically do not write their own headlines. Others on the newspaper staff do so to meet space requirements.

Harvard and the Limits of the Massachusetts Mandate

Previous posts have discussed the limits of autism mandates, noting that they do not apply to self-funded plans, such as Harvard's.  The Boston Globe reports:

It’s been nearly two years since Massachusetts passed one of the strongest laws in the nation mandating that insurers provide coverage for the diagnosis and treatment of autism, without any annual or lifetime limits on the amount of coverage. Yet some of the state’s biggest employers — including Boston University and Harvard — don’t provide coverage for therapeutic services that can cost families tens of thousands of dollars every year 

They don’t have to under the state’s ARICA law because they’re self-funded plans that are regulated by federal law and not subject to state law. The federal government added autism coverage to its benefits package for federal employees last June. 

Some Boston-area companies with self-funded plans such as Partners HealthCare, Tufts University, Iron Mountain, the Lahey Clinic, State Street Corporation, and Ocean Spray have opted to include autism coverage in their health plans. Others, though, seem to be dragging their heels. 

“Places like Harvard and BU don’t provide coverage for their employees, but they were part of the [Autism] Consortium that testified in support of the state legislation mandating coverage,” said Judith Ursitti, director of state government affairs at Autism Speaks, a nonprofit advocacy and research group. “It’s ironic hypocrisy.”

The Shooting and the Media

At On the Media, Bob Garfield talks with the Columbia Journalism Review's Curtis Brainard about the Connecticut shooting and the perils of  inaccurate coverage linking violence to the autism spectrum:


 

At CNN, Sarah Darer Littman writes:

When my son was diagnosed at age 5, I had many feelings of my own to sort out, a process made infinitely more difficult by others rushing to judgment. Like that 30-minute, long-distance haranguing from a member of my ex-husband's family asking me why I was "damaging" my child by "labeling" him. Imagine how much more reluctant families will be to accept a diagnosis now if there is a link in their minds with being a potential mass murderer -- even when there is no evidence whatsoever this is the case.

"We're very concerned about families feeling stigmatized and being afraid to seek services for fear that their child will be seen as a possible 'monster,'" said Sara Reed, director of advocacy and family services for an autism resource center in Connecticut. "We've done so much work in the last few years trying to reduce stigma and isolation -- to help families get the support and services that they need and deserve. It's difficult enough to raise a child with a disability. We don't need misinformation and community 'rush to judgment' to make it worse."

Journalists, please be responsible. Don't just roll out the celebrity doctors. World-renowned autism expert Dr. Fred Volkmar of the Yale Child Study Center is right here in New Haven. Your shoddy work impacts our children's lives.

Meanwhile, we parents will continue to explain to our kids, who have already grown up trying to overcome feelings of isolation and difference, that what Lanza did has no more to do with them than if he were diabetic or left handed -- and I'll admire and love my son more every day for teaching me to think out of the box.

Deanna Pan writes at Mother Jones:

"We are a community that faces tremendous stigma and prejudice, and unfortunately when this happens, the mainstream media presents stereotypes and inaccurate information about autism and disability that only make that stigma and prejudice worse," says Ari Ne'eman, who is the president of the Autistic Self Advocacy Network and himself autistic.
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"We want to hunt for explanations. We want reasons for horrible things that happen," saysSteve Silberman, a Wired reporter who's currently writing a book about autism and neurodiversity. "The problem is that people tend to go for these sort of pre-packaged, stereotypical explanations …and that's one way we make people who commit these acts seem not like us…and somehow less than human."

This shoddy reporting, particularly from influential and far-reaching news outlets, has real consequences in shaping the public’s perception of autism and other disabilities, Ne'eman explains.

"We're like anyone else. We're people who apply for jobs, look for places to live, apply to colleges. We're generally looking to be included in society and when there is a myth out there that we're people you have to be afraid of, that has a practical impact," he says. "We talk to a lot of people, for example, who are discriminated against in the workplace after they disclose their diagnosis."

TRICARE in the Conference Report

Previous posts have described the progress of TRICARE legislation in Congress. Autism Speaks provides an update on the defense authorization conference report:

Both the House and Senate had approved bipartisan amendments to the new defense authorization bill requiring coverage for military retirees, in addition to active duty members, and provided for recommended levels of care consistent with best practices. The Senate version went further by incorporating the Coast Guard, the National Oceanic and Atmospheric Administration and the U.S. Public Health Service.

When the House and Senate met in conference committee to reconcile their two bills into a final version, the members noted their awareness of ongoing litigation in which the U.S. District Court ordered TRICARE to provide ABA benefits to all service members as a medical treatment.

“The conferees understand that the plaintiffs and DOD have each submitted motions to reconsider the court order,” the conference committee reported. “The conferees have provided DOD this one-year authority in order to allow DOD to assess such coverage independent from litigation proceedings."

The one-year pilot program is to start within 90 days of enactment of the new DoD authorization bill. Within 270 days, DoD will then be required to report to Congress on costs and any recommended legislative remedies.

At Time, Jeremy Hilton is skeptical:

For those who don’t know, anytime the Defense Department is told to conduct a “pilot program” or to “study” an issue, the results will most likely not be in the interest of anyone but the Pentagon. The conferees cited an ongoing class-action lawsuit, seemingly as one of their reasons for wanting to put the pilot program in place (see page 123 of the conference report).