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Tuesday, July 7, 2015

"A Foot in the Door"

Lauren Mc Donald of the Morris News Service reports that Ava's Law has gone into effect.
Due to a new state law that took effect July 1, private insurance companies must provide coverage for the best therapeutic treatment for children with autism ages 6 and under.
Ava’s Law, passed unanimously this year by the Georgia General Assembly, requires private insurance companies to cover Applied Behavior Analysis therapy for the first time in the state’s history. Georgia became the 41st state to require coverage.
...
Over the past eight years, the Georgia General Assembly has continually increased the amount of state funds appropriated for nonprofit organizations that provide diagnosis, care and treatment. The state provides $4.2 million to nonprofit organizations, such as the Matthew Reardon School, a year-round school for autistic children.
It costs $40,000 per year for the school to educate each student, said Patti Victor, the school’s president and CEO. State and private funding allows the tuition to remain low enough for families to afford.
...
And even though Ava’s Law has been passed, she said a lot of families still do not have private insurance and will not be covered because the law only applies to insurance companies selling policies. It doesn’t include large employers who insure themselves. However, the state’s insurance for government workers and teachers began including the coverage last year, before the law required it.
Victor said the law provides a “foot in the door” for future legislation.
“What’s happens when the child turns 7?” she said. “From a long-term standpoint, an important part of Ava’s Law is that it has put autism on the minds of people who have the ability to pass laws and to offer assistance.”

Monday, July 6, 2015

"In the Autism World, We Fight"

In The Politics of Autism, I explain that conflict pervades the issue.  At The Huffington Post, Michael John Carley makes a similar point:
Unlike the worlds of Cystic Fibrosis, or Down Syndrome; the autism world also does not have one, primarily-unifying non-profit that everyone rallies around, goes on fundraising walks for, or volunteers for in the consensus-filled spirit of shared goals. In the autism world, we have a gajillion such organizations, almost never representing the entirety of the spectrum, and founded partly in the rejection of existing orgs. And with all those non-profits, no centralized guiding entity exists, or can exist. Sadly unable to coalition, they then compete for limited funds and press attention...by screaming. Whether it's spectrum folk like myself going after one another to jockey for attention,1,2, stating that Autism Speaks is complicit in murders, or destroying chat group relationships over semantic issues; OR whether it's the pro-cure folks producing the infamous "I Am Autism" video, the declaration that all 3 million of us can't use the toilet (uh, last I checked...?), the b.s. statistic of an 80% divorce rate, or the anti-vaxxers' insinuation that people like myself are simply poisoned, chemical accidents...we get comedy worthy of Vonnegut.

The present leadership of major players in the world of autism politics--rather than trying to soothe or steer the emotions of its overwhelmed members towards healthier perspectives--often willingly, in that battle for recognition, pours figurative gasoline on the fires consuming their constituents (whereas in other fields, competitions are resolved by comparing the results of their programs). Instead of healing, big-picture perspective, they douse those who trust and need them with alarmist, often misinformative rhetoric.
In the autism world, we fight. We fight over words, vaccines, aversives, behavioral strategies, and what research is ethical or that which is not. Most of the consequences for winners and losers of these fights surround our attitudes towards what constitutes a happy life, and this is rather big stuff; while other battles--vaccines and aversives--can determine whether people live or die. There is cause for anger, especially when services are the opposite of satisfactory, yet the majority of funding goes towardsgenetic studies having no impact on families living today.

Sunday, July 5, 2015

Measles, Death, and Immunization

Kim Christensen reports at The Los Angeles Times:
Three days after Gov. Jerry Brown signed one of the nation's strictest mandatory vaccination bills, several hundred opponents rallied in Santa Monica on Friday and vowed to repeal it.
...

Speakers at the rally included Andrew Wakefield, whose 1998 study in the medical journal Lancet claimed a possible link between the measles vaccine and autism. The study was later debunked as fraudulent and retracted, but Wakefield remains a hero in the anti-vaccination movement.

"I have been in this for 20 years and I will fight this battle until I die, because your children are worth fighting for," he told the crowd, which gave him a rousing ovation.

Tony Muhammad, student Western regional minister in the nation of Islam, invited the audience to join in a multicultural, multi-religious effort to repeal the vaccination bill.

"I will be damned if I'll let anyone come into my house and tell me what to do with my children," he said.
Frank Bruni writes at The New York Times:
The anti-vaccine agitators can always find a renegade researcher or random “study” to back them up. This is erudition in the age of cyberspace: You surf until you reach the conclusion you’re after. You click your way to validation, confusing the presence of a website with the plausibility of an argument.
Although the Internet could be making all of us smarter, it makes many of us stupider, because it’s not just a magnet for the curious. It’s a sinkhole for the gullible.
It renders everyone an instant expert. You have a degree? Well, I did a Google search!
Vaccine opponents are climate-change deniers with less gluten and more Prada, chalking up the fact that they’re in a minority to the gutless groupthink of the majority.
They’ve learned that as soon as you allege collusion and conspiracy, you’ve come up with a unified theory that explains away all opposition and turns your lonely stance into a courageous one.
A woman killed by measles in Washington state had been vaccinated against the disease as a child but succumbed because she had a compromised immune system, a local health official told a TV station.

The woman's death was the first from measles in the U.S. in 12 years and the first in the state in 25 years.

The case wasn't related to a recent outbreak that started at Disneyland and triggered a national debate about vaccinations, according to the Washington State Department of Health. Officials said it was a different strain.

The Washington woman lacked some of the measles' common symptoms, such as a rash, so the infection wasn't discovered until an autopsy, department spokesman Donn Moyer said Thursday.

Dr. Jeanette Stehr-Green, the Clallam County health officer, told KOMO-TV in Seattle that the woman had been vaccinated as a child, but because she had other health problems and was taking medications that interfered with her response to an infection, she was not protected.

Saturday, July 4, 2015

What Terms to Use?

From the preface to The Politics of Autism.
A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

[i] Lydia Brown, “The Significance of Semantics: Person-First Language: Why It Matters,” Autistic Hoya, August 4, 2001. Online: http://autisticadvocacy.org/identity-first-language/

[ii] Kathie Snow, “A Few Words about People-First Language,” Disability Is Natural. Online: http://www.disabilityisnatural.com/images/PDF/pfl-sh09.pdf 

At Autism, Lorcan Kenney and colleagues have an article titled, "Which Terms Should Be Used To Describe Autism? Perspectives From The UK Autism Community."  The abstract:
Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an
online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an openended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some
disagreements appear deeply entrenched.

Friday, July 3, 2015

Smell Test for Autism? Maybe, Maybe Not

Like many other outlets, The International Business Times is reporting on a possible "smell test" for autism:
It may be possible to diagnose autism in children by measuring their reaction to smells, according to a new study that found a marked difference in the reaction to odors from children with the disorder, compared to those without it.
While most people automatically inhale a pleasant smell deeply, and seek to limit their breathing in order to avoid unpleasant ones, autistic children do not make this distinction, the study, published in the journal Current Biology, found.
In The Politics of Autism, I discuss media coverage. Journalists frequently over-interpret or misinterpret research findings, and sometimes the stories rest on mere anecdote.  So we have had pieces about "miracle cures," medical testsdietsmultiple risk factors,

In this case, the study looked at 36 subjects, 18 of whom have autism.  If other researchers replicate the study -- a big if -- perhaps the findings will hold up.  Perhaps they will not.  But it is extremely premature to speculate on changes in diagnostic procedure on this basis of this one article.

Thursday, July 2, 2015

Carrey, Autism, and Tuberous Sclerosis

Buzzfeed reports that Jim Carrey is digging himself a deeper Twitter hole:
On Wednesday, Carrey continued this message with a series of tweets that included photos of children with autism. One, showing an unnamed boy crying with his arms behind his head, read: “TOXIN FREE VACCINES, A REASONABLE REQUEST.”

The boy is 14-year-old Alex Echols of Eugene, Oregon. And his family is pretty annoyed with Carrey’s tweet.
“Jim Carrey has a huge platform — a huge following — and is misrepresenting my son’s image by attaching it to his anti-vax rant,” Alex’s mother, Karen Echols, told BuzzFeed News by email.
Alex was born with a genetic syndrome called tuberous sclerosis, or TSC, which causes benign tumors to grow all over the body, including the brain. Many children with TSC have autism, including Alex.
Alex lives in a group home. Echols and her husband, Jeremy, are open about his condition, maintaining a website, alexneedshelp.com, and a Facebook page to try toadvocate for the use of medical marijuana to calm his seizures, self-injurious behaviors, and anxiety.
At Forbes, Emily Willingham writes:
The condition gets its name from the potato (tuber)-like growths that develop in the brain, as visible on MRI, that eventually harden, or sclerose. It traces to two gene variants that result in the development of these benign growths in many tissues. ‘Benign’ references only the fact that they aren’t cancer—their effects are not benign, particularly in the central nervous system. While the effects can be mild, often the condition is associated with epilepsy, developmental delay, and … autism.
In fact, about a third to half of children who have tuberous sclerosis could also be diagnosed with autism. Each condition is associated with seizures, and there are hints that disrupted connections among brain regions might be responsible for both the seizures and the social communication deficits of autism.
It’s ironic that Jim Carrey, in his effort to argue a debunked link between vaccines and autism, accidentally drew attention to one of the few factors that have been strongly linked to autism. Some celebrities, however, such as Julianne Moore, were way ahead of the curve and have been working a little more deliberately to draw attention to tuberous sclerosis.

Wednesday, July 1, 2015

Carrey Tweets

The group gained a key supporter in actress Jenny McCarthy, who believed that vaccines had caused her own son’s autism. McCarthy, who had already gained a great deal of publicity for the vaccine theory by discussing it on the Oprah Winfrey show, became the group’s president. (It briefly called itself “Jenny McCarthy and Jim Carrey’s autism organization,” but the celebrity couple split in 2010.[i])



[i] John J. Pitney, Jr., “Gossip and Autism,” April 6, 2010.  Online: http://www.autismpolicyblog.com/2010/04/gossip-and-autism.html.

Jim Carrey left his 14 million Twitter followers in no doubt about his feelings on California's tough new vaccination law on Tuesday.
The actor believes there is a link between vaccines and autism. He branded California Gov. Jerry Brown a "corporate fascist" after he signed into law one of the strictest immunization programs in the country earlier in the day.
In a series of more than half a dozen tweets that ended in a flurry of capital letters, the Golden Globe winner insisted he was "pro-vaccine." He was only "anti-neutrotoxin," he said, repeating his claim that ingredients such as thimerosal and mercury carry a risk to children.
Thimerosal has been removed from or reduced to trace amounts in all vaccines routinely recommended for children 6 years of age and younger, with the exception of inactivated influenza vaccine (see Table 1). A preservative-free version of the inactivated influenza vaccine (contains trace amounts of thimerosal) is available in limited supply at this time for use in infants, children and pregnant women. Some vaccines such as Td, which is indicated for older children (≥ 7 years of age) and adults, are also now available in formulations that are free of thimerosal or contain only trace amounts. Vaccines with trace amounts of thimerosal contain 1 microgram or less of mercury per dose.