– Jeff and Jill

Post from: Blisstree

Autism Vox Goodbye

That act requires insurers to cover care for mental and behavioral problems at the same levels they do for physical illnesses. The ruling came as part of a lawsuit filed by Consumer Watchdog, a Santa Monica advocacy organization, against the California Department of Managed Health Care to require the agency to side with consumers when insurers refuse to pay for ABA therapy. The ruling also clears the way for a trial to determine whether the department, which is responsible for regulating health plans, is doing enough to require insurers to cover such treatment. A spokeswoman for the department said the ruling would not change the way it handled disputes over autism therapy.

*     *     *

Photo courtesy of Andreanna (flickr.com)

A branch of Toronto’s Hospital for Sick Children is being criticized for funding an autism conference whose organizers champion the belief that childhood immunization causes the neurological disorder. The event, slated to start Saturday at the University of Toronto, also includes presentations that some experts are calling unproven science, promoting such alternative treatments for autism as homeopathy and hyperbaric oxygen chambers. Organized by AutismOne and Autism Canada, the meeting has received $5,000 in funding from SickKids Foundation, the hospital’s fundraising wing. Blogs designed to expose practitioners of dubious science have railed against the event for the past two months. A spokeswoman for the foundation said the grant was awarded in May after Autism Canada submitted a detailed application. The Foundation also indicated that it takes a “neutral stance” on alternative and complementary health care for children, and has a history of funding it.

*     *     *

Those readers looking for a new blog might consider Autism Blogger, which offers a most interactive free site for members to share stories, news, blogs, videos, images, and more. It may not look absolutely cutting edge and all Flashy, but put a note here and dozens of readers will flock to it within just a few hours. Among its qualities of use, AB is simple and direct — just what autism itself never seems to be — and a terrific way to connect with others involved in the condition.

Post from: Blisstree

Insurance Tactic Shot Down in L.A.

Photo/D Sharon Pruitt (Pink Sherbet Photography, flickr.com)

Elsewhere in the U.K., a 20-year-old Wales man who’s admitted to encouraging a 12-year-old boy with Asperger’s to engage in sexual activity on a cam has been allowed to continue using the Internet for work. The boy’s mother has lashed out at the decision.

*     *     *

The first in a series of reports examining public services for ASD infants, children and youth in Tennessee, by the Comptroller of the Treasury’s Offices of Research and Education Accountability (OREA), is out: “Autism in Tennessee: Part 1 – An Introduction to Issues and Data Collection Methods,” provides an overview of autism as a disability, a review of associated laws, and includes autism data collection and prevalence estimates. Subsequent reports to be released in the series will review public education and health care services as they relate to autism in Tennessee.

The number of children and youth receiving autism-related special education services in Tennessee more than tripled from approximately 1,293 to 4,019 between 2001 and 2007. The report also points out that it is difficult to obtain accurate, reliable information on who receives autism-related services.

Tennessee officials say it might be good to go the route of other states, most recently New Jersey, to create autism registries.

Post from: Blisstree

Asperger’s Defense; ASD in Tenn.

ABC News reports that doctors have begun “firing” parents who decline to have thier children vaccinated. One California mom, who’s oldest child has been diagnosed with autism said her doctor said the presence of her and her child was “too much of a liability.” Doctors are apparently feeling more compelled to say “no” back to anti-vaccine parents.

The issue surfaced this at the annual American Academy of Pediatrics meeting in Washington, D.C. Presenter Dr. Gary Marshall said there are some cases when it’s ethical and legal to refuse to continue to see, or treat, a child, especially if parents and the physician will never see “eye-to-eye” on a specific issue. Stipulations for such situations include written notice that the doctor will no longer treat the children and giving parents at least 30 days to find another physician.

Both sides in this debate continue to bet very heavily that they’re right. Regarding this new issue, I feel the parents have thought this matter through with the full attention of their minds and hearts, but I must wonder if the doctors can say the same?

*     *     *

Photo/Jill Cornfield

Autism Speaks will hold a forum on November 13 to discuss challenges facing adults with autism and possible strategies and solutions. The Advancing Futures for Adults with Autism Town Hall will be held at AS’s

Chicago location or remotely through the Virtual Town Hall. See more information here.

*     *     *

I did an interesting (at least as far as the composition of the audience went; I’m just assuming they enjoyed it) presentation earlier this week at the Laurelmead residence in Providence, R.I. The event was set up by a former professor of mine — a sweet guy, and I’m delighted to be back in touch with him and his wife after all these years — and attracted some 30 senior residents of Laurelmead. I usually speak to teachers, parents, future sped teachers, and other professionals, and had never had an audience like this one. Some were grandparents wondering how to interact with their autistic grandchildren and some were just plain curious about a family lifestyle that’s making more and more headlines. I thank them for their attention, and I hope they found the presentation helpful and entertaining.

Thanks too to Vox readers who were saddened to hear we’d not be doing this blog after November 1.

*     *     *

Congrats to the Phoenix-based Southwest Autism Research & Resource Center (SARRC), a non-profit working to advance research and provide support for individuals with autism and their families, which has secured a $100,000 grant as the winner of the 2009 Arizona Benefits grant, funded by health benefits company Humana Inc. With the award, SARRC will create GardenWorks, a community-based program designed to engage individuals with ASDs in developing and sustaining a revenue-producing co-op garden. SARRC hopes to teach gardening and landscaping skills those with ASDs can use for work, while community members will be encouraged to mentor those individuals.

Post from: Blisstree

Firing Parents?

*     *     *

Photo courtesy of Paul L. Nettles (flickr.com)

I ran across some more interesting points from the recent talk by Dr. Tony Attwood (two T’s, by the way). Among them, and I’m not sure if was kidding: Aspies worldwide who speak English tend to do so with an American accent. Attwood said this might be because they learn so much from reading and from TV, the latter of which even worldwide tends to be dominated by American programming and the former of which teaches how to pronounce words as they’re spelled, not as they’re pronounced.

Among other points: risk of Asperger’s increases with increased age of the parents; Aspies’ “intoxicating” passions and interests also tend to act as “thought blockers” to keep at bay a world they don’t completely understand; many of their behaviors are driven by anxiety and avoidance of emotions they can’t control; and in the past Aspies gravitated toward such professions as monastic lives, exploring, farming, and crafts, and today’s world offers fewer of such opportunities.

A reminder that Attwood’s PowerPoint slides of his Monday YAI presentation are here.

*     *     *

Faster Times has put up my blog on Elmo. What can one say about Elmo that either Elmo or headachy parents haven’t said already? Nonetheless, I tried.

*     *     *

We’re sorry to pass on that effective at the end of this month, we’ll no longer be doing AutismVox. It’s been fun, as well as challenging and informative, and we’ll miss connecting daily with the readers. Thanks for all your attention and comments.

Post from: Blisstree

Genetics, More Observations from Attwood

*     *     *

Photo courtesy of shoothead (flickr.com)

Massachusetts state Rep. Barbara L’Italien, whose child is autistic, has introduced a bill that would require schools to address bullying and how to identify it at special education parent-teacher and IEP meetings. Advocates cited a 2002 study that found 94 percent of children with Asperger’s Syndrome face torment from peers. More is here.

*     *     *

The Sprout Touring Film Festival may be coming to a theater near you. For those unfamiliar with Sprout, it presents movies about and by people with a variety of conditions. Cities include Albany, N.Y., on 10/23 at the NYSARC Annual Convention; Charlottesville, Va., on 11/7, at the Virginia Film Festival; and in Pittsburgh on 11/14 at the ARC of US National Convention. If you are interested in bringing the best of the Sprout Film Festival to your area, they’ll work with you to tailor programs and bring a custom version of the festival to your area. Contact anthony@gosprout.org and for more information on Sprout go here. Jill and I attended Sprout here in New York a few years back, and found the event so inspiring that we took the giant step of actually buying a T shirt!

*     *     *

Alex keeps coming home with school with books, titles I haven’t seen before, He traces his finger along the cover and wants me to read it to him so he can repeat it. I’m encouraged by his reading and curiosity, but I do wonder if he has anyone’s permission to remove the books. We’ll be addressing his new school with proper attention next week, finally, following some family and professional events, and look forward to his getting his sticky-fingeredness under control.

Post from: Blisstree

Mercury; Bullying Bill; Film Festival

Dr. Tony Atwood (photo courtesy YAI)

Atwood, who has worked with Aspies for years and founded a clinic some 17 years ago to work specifically with those with the condition, spelled out many interesting aspects of Aspies, some well-known and some lesser-known: social awkwardness; obsessive interests and a desire to point out mistakes regardless of the feelings of others; a behavior as children more akin to “miniature adults.” He also noted that he never likes the term “suffers from Asperger’s.” “You suffer from other people’s ignorance,” he said.

Many Aspies seem to speak with American accents, noted the British-born Atwood, attributing this to TV and wide reading, “pronouncing words as they’re spelled rather than how they’re pronounced,” and seem to live in a constant state of anxiety, often brought on school years by the fear of being bullied. Sadly, he added, Aspies make inspiring, “alone and unsupported” targets for schoolyard “predators” who can destroy any social confidence that’s been laboriously built up.

Girls also tend to be better at hiding signs of Asperger’s during childhood, he added, though the condition often emerges as a secondary diagnosis during the teen years or after the adult women has had a child who is diagnosed.

Atwood’s PowerPoint was slated to be available on the YAI conference site by mid-week. I’d recommend him highly if anyone needs a top-flight presenter. A great mix of fact, theory, well-found research and personality.

*     *     *

In New Jersey, Gov. Corzine ’s latest proposal to strengthen services for people with autism has met with cheers from families and advocates, but some in the wider developmental-disabilities community fear the state may veer toward a two-tiered system favoring one diagnosis. Corzine’s administration plans to open an Office of Autism Services within the state Department of Human Services, and a task force will address improving housing, job training, education, transportation, and financial security for autistic people after 21, the “Close Sesame!” age for federal entitlements and school-based therapies. Other recommendations could include creating a tax-free savings account akin to a 529 higher-education plan.

The ARC of New Jersey, while praising the raising of the right issues, warned that this overall solution focuses “on one segment” of the problem, perhaps to the extent of overlooking those with such conditions as Down syndrome or CP.

“We want folks with autism to get all the services they need, but setting up a separate office like that sets up a two-tiered system,” he said. The task force counters that its recommendations are directed to adults with ASD, but could be applicable to other disabilities.

Post from: Blisstree

Great Aspie Presentation!

A touchdown statement if I ever heard one. And here’s the extra point from the head the Flutie foundation for autism: “Parents will … be dismayed to discover that, though they’ve always paid their health care premiums, their health plans will not cover these services. Why don’t health plans cover treatments for the fastest-growing health threat to children?”

I’m somewhat familiar with kidney transplants, and the one 20 years ago in my family was completely paid for and coordinated by a state’s kidney foundation. Government, or private? We didn’t know at the time, and had no time to puzzle it out. But we heard a legend that such public funding existed for transplants because decades before friends and relatives had wheeled sufferers of renal failure right into the halls of Congress and said to the reps, “Know what? Unless you act, all these people are going to die. And they vote. And so do their loved ones!”

Someday, just as we once decided our highways and military protection needed to be public in funding and maintenance, someday sooner than we think the idea of affording healthcare for the wildfire of autism will be handled outside the private sector. For better or for worse, but at least there will be, well, a public option. As always for parents facing such a situation, the key question becomes “When?”

*     *     *

*    *    *

Photo courtesy of ЕленАндреа (flickr.com)

The site I Teach Autism has run my piece on doing Alex’s homework with him. Feedback welcome, as always!

Post from: Blisstree

When?

Any research is certainly progress, but one problem might be that the damned spectrum is so large that covering every case with one cause might well be impossible. Indeed, scientific consensus now is that we’re all talking about a collection of disorders probably related, according to the scientific affairs department at Autism Speaks. But if other researchers, working independently, reach these same results soon, experiments can be done to begin to unravel environmental factors might interact with genes to contribute to ASDs. Earlier this year, other researchers found evidence that a cadherin 10 mutation, more common in people with autism, may play a role.

The ultimate goal, not surprisingly: use the info to diagnose or even treat autism, which researchers admit isn’t likely to happen soon.

*     *     *

Photo courtesy gruntzooki (flickr.com)

Chiming in, remains to be done regarding research, according to experts from the Center for Autism Research at The Children’s Hospital of Philadelphia (CHOP). Their recent co-authored review summarized findings by autism researchers globally, and appeared in the British journal The Lancet. Some recurrent themes of the review, none of which will surprise most ASD parents, are the expanding knowledge of early brain development, and the importance of early diagnosis of ASDs, accompanied by intensive early treatment. Researchers are also recognizing the key role of parent involvement in early recognition of ASDs and in reinforcing their child’s behavioral treatments at home, another other findings. Another big finding, at least until they come with a safe cure: Researchers are starting to stress investigation of methods for supporting families “to reduce parental stress.”

The authors note that the most researched treatments are those based on ABA, which recently have been married with other behavioral programs “more akin to real-life situations,” with increased effectiveness. Medications may be effective, the authors found, in relieving related symptoms such as irritability and anxiety.

In the parents or in the children? Science, a world necessarily dry if it’s to remain objective and effective, nonetheless remains a long way from the flesh and blood of life with autism.

Post from: Blisstree

The Cause, the Cause

Though the government has pledged support and says it will an autism strategy “in due course,” one’s first reaction might be that these people have gone without enough in life – including living with an overall view in society that they can contribute. Imagine too the uproar if the overall unemployment rate in this or any other country hit 85% in a given sector of the population?

photo courtesy of Zeusandhera (flickr.com)

* * *

The mother of a 7-year-old boy with autism and a severe peanut allergy has filed a lawsuit claiming a teacher tossed her son a peanut-filled Mr. Goodbar candy bar in hopes of sickening him and keeping him from going on a zoo field trip, according to news reports. The boy didn’t eat the candy bar, but the mom says her son suffered physical and emotional abuse at the hands of his teacher, and filed a lawsuit in Marion County against her son’s Indianapolis school. She also wants criminal charges filed against the teacher, who has denied doing anything to prevent the child from attending the trip or harming any children. The teacher has since resigned from the Perry Township district school.

* * *

Post from: Blisstree

Employment, a Suit, and a Tragedy