IACC Meets

This past week the Interagency Autism Coordinating Committee (IACC) met for the first time since reauthorization of the Combating Autism Act.  Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D., reports:

“Frustration” is the word that best captures the sentiment of the many members of the public who attended and spoke at the meeting. Whether one views the progress of the past several years as a “cup half empty” or a “cup half full,” one thing is clear. The cup isn’t full.
Secretary Sebelius, who spoke at the meeting, rightly applauded the passage of the Affordable Care Act. This legislation guarantees that no one can deny insurance coverage to individuals with autism. Additionally, insurers must pay for autism screening and end lifetime limits to coverage.

Secretary Sebelius also acknowledged that, while progress has been made, we have a long way to go, and we need answers from research. She stressed the need to make more progress in early detection and access to intervention for ethnic minority communities, who are sorely underserved in our country.

... Furthermore, although the new health care law means that autism screening must be covered, a bigger problem is that pediatricians often fail to screen for autism, despite the fact that the American Academy of Pediatrics recommends they do so twice by the time a child turns two.

As I pointed out in a comment I made directly to the Secretary, the autism community is frustrated and impatient. After all, since Congress established the IACC, autism’s prevalence has dramatically risen. The annual costs of autism care have increased from $35 billion a year to $137 billion. At least half of children with autism don’t receive early intensive behavioral intervention, despite the fact that an NIH-funded study showed that such interventions can produce life-changing outcomes.

We have only two FDA-approved medicines for the treatment of autism, and these medicines don’t address its core symptoms. A large proportion of adults with autism remain unemployed and socially isolated, most living unengaged in their parents’ home. We know almost nothing about the health needs of adults with autism, nor how their needs change with age. We do know that the mortality rate for individuals with autism is six times higher than the general population.

...
Michael Doyle and Christopher Smith, U.S. representatives who co-sponsored the Combating Autism Act and chair the Congressional Autism Caucus, spoke at the meeting. Doyle noted that the "CDC revealed shocking new numbers and much more needs to be done to understand the causes of the increase." He stressed that, in this fiscal climate, we are unlikely to get additional resources for autism. Smith similarly noted "scarce dollars and overwhelming need." He emphasized the need for environmental risk factor research and also talked about autism from a global perspective, noting that 67 million persons are affected worldwide.

Francis Collins, director of the National Institutes of Health (NIH), reviewed the progress in scientific research that has been made in the last five years, including the ability to diagnose earlier, a five-minute screening test that can be administered at the one-year checkup, early intervention for toddlers and identification of genetic and environmental risk factors. He talked about the NIH's commitment to translational research, stating that the NIH has stepped forward to address bottlenecks in the translation of biological discoveries into therapeutics in the clinic.

I and others raised the concern that it’s difficult to accurately monitor how much the federal government is spending on autism research and services. The IACC portfolio analysis is a step in the right direction. But questions remain about how funding is categorized. What funds are being directed to research? What funds actually go to services? How much of the research categorized as “autism research” truly focuses on autism rather than topics only indirectly related to autism?

Immediately following the meeting, the Autism [sic] Self Advocacy Network (ASAN) released an alert asking people to write to Health and Human Services to express their concerns about how funding is tracked and allocated and to advocate for more research on services. (See their action alert, here.)

In his wrap-up, Tom Insel, director of the National Institute of Mental Health and chair of the IACC, noted that, even among those on the committee, great differences remain in how autism is viewed. Some see autism as a disease that needs to be cured. Others think of it as a disability and, as such, believe the primary focus should be on services and supports. Others see autism as an injury deserving of compensation with prevention being the foremost goal. He urged the committee members to find common ground.

Autism, Social Media, and the Internet

Although this report from the Pew Research Center is not specifically about autism, it does suggest the importance of the internet to caregivers:

Thirty percent of U.S. adults help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Most are caring for an adult, such as a parent or spouse, but a small group cares for a child living with a disability or long-term health issue.

Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health information, outpacing other internet users on every health topic included in our survey, from looking up certain treatments to hospital ratings to end-of-life decisions.

Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.

The abstract of Cornelia Betsch et al., "Opportunities and Challenges of Web 2.0 for Vaccination Decisions," Vaccine 30 (2012) 3727– 3733:

 A growing number of people use the Internet to obtain health information, including information about vaccines. Websites that allow and promote interaction among users are an increasingly popular source of health information. Users of such so-called Web 2.0 applications (e.g. social media), while still in the minority, represent a growing proportion of online communicators, including vocal and active antivaccination groups as well as public health communicators. In this paper, the authors: define Web 2.0 and examine how it may influence vaccination decisions; discuss how anti-vaccination movements use Web 2.0 as well as the challenges Web 2.0 holds for public health communicators; describe the types of information used in these different settings; introduce the theoretical background that can be used to design effective vaccination communication in a Web 2.0 environment; make recommendations for practice and pose open questions for future research. The authors conclude that, as a result of the Internet and Web 2.0, private and public concerns surrounding vaccinations have the potential to virally spread
across the globe in a quick, efficient and vivid manner. Web 2.0 may influence vaccination decisions by delivering information that alters the perceived personal risk of vaccine-preventable diseases or vaccination side-effects. It appears useful for public health officials to put effort into increasing the effectiveness of existing communication by implementing interactive, customized communication. A key step to providing successful public health communication is to identify those who are particularly vulnerable to finding and using unreliable and misleading information. Thus, it appears worthwhile that public health websites strive to be easy to find, easy to use, attractive in its presentation and readily provide the information,
support and advice that the searcher is looking for. This holds especially when less knowledgeable individuals are in need of reliable information about vaccination risks and benefits.

Insurers Have Not Come Through in Utah

The Salt Lake Tribune reports:

Though Utah has yet to join the several dozen states mandating insurance coverage of autism treatment, legislators created an autism-treatment pilot program earlier this year that was expected to be voluntarily funded, in part, with private dollars. The two-year pilot was seen by many as a compromise, providing treatment for about 350 children between the ages of 2 and 6, through a combination of Medicaid, state and private dollars.

House Speaker Becky Lockhart said Wednesday that "no one has reneged on the commitment" and that the donations would be divulged in a future news conference. Rep. Ronda Menlove, R-Garland, who sponsored the bill to create the pilot, could not be reached for comment. Two of the funders, including Zions Bank, said their pledges remained good.

"We’re still committed to providing funding for that and will do so at the appropriate time, when that’s indicated by the state," said Daron Cowley, a spokesman for Intermountain Healthcare.

Yet state officials say they have not received any funding though the law went into effect July 1. Not having the private dollars could reduce by more than half the number of children in one part of the pilot program, which is set to begin in the coming months.

IDEA, LRE, and Transitions

Nirvi Shah writes at Education Week:

Too often, when students with disabilities are moving from school to the workplace—a phase typically called transition—some of the basic tenets of the federal Individuals with Disabilities Education Act are ignored, said Jeff Spitzer-Resnick, managing attorney for Disability Rights Wisconsin.

That includes being placed in the least restrictive environment—in other words, with nondisabled peers to the extent possible.

"We have long been concerned that children with disabilities in general were not getting what they needed in transition," he said. For too long, "transition" meant a pipeline to work in a segregated environment, often at so-called sheltered workshops, which typically pay less than minimum wage, he said, "without any real conversation about whether this was appropriate. What about a job coach? What about assistive technology? [These are] all the things they consider for the classroom environment?

While the problem is a stubborn one, in part because work options in some communities are limited in general and in part because of a lack of teacher training about transition, Spitzer-Resnick said there's hope.

A letter from the U.S. Department of Education to his organization last month about this issue emphasizes that the tenets of IDEA do apply to transition.

Unemployment and Disability

Previous posts have dealt with the employment challenges facing people with ASD (e.g., sheltered workshops that segregate and stigmatize).  Monthly labor statistics do not have a separate category for autism, for overall data for the disabled may give some hint of the magnitude of the problem. Shaun Heasley writes at Disability Scoop:

Some 13.3 percent of those with disabilities were jobless in June, according to a monthly employment report from the U.S. Department of Labor released late last week.

That’s an increase from 12.9 percent unemployment the previous month.

Meanwhile, the jobless rate for the general population remained flat at 8.2 percent as the economy added 80,000 new jobs, a figure seen by many as disappointing.

The situation is even more disturbing than these numbers suggest. According to the Bureau of Labor Statistics, the labor force participation rate for people with disabilities was a mere 20.5 percent, compared with 70 percent for the non-disabled population.

50 Cent Apologizes

In an apparent resolution to a controversy, 50 Cent has tweeted:

Is it sincere?  Maybe, but it's more likely that some public relations person put up these words to make the controversy go away.

TV Coverage of the California Mandate

KSEE in Fresno:



KTTV in Los Angeles:

Los Angeles Local News, Weather, and Traffic

Miss Montana

The new Miss Montana is from the community of Cut Bank.  She is also on the spectrum.  The Great Falls Tribune reports:

At the conclusion of the statewide competition held in Glasgow this year, 18-year-old Alexis Wineman was crowned as Miss Montana. Wineman is a recent graduate from Cut Bank High School and the daughter of Kimberly Butterworth and Michael Wineman.

Wineman' s selection as Miss Montana is made even more impressive by her own struggle to overcome the stigma of autism.
...

People with high functioning autism frequently suffer from frequent and intense feelings of loneliness, and may have trouble making and maintaining friendships. Despite this, Wineman, who was diagnosed with the disorder in the seventh grade, won the prestigious competition that requires both poise and confidence.

Wineman said she was a bit "shocked " to win the Miss Montana, especially in her first year of competition. Yet the judges found something compelling in her presentation, a platform of autism awareness entitled, "Normal is just a dryer setting — Living with Autism."

Soon after her selection, KXGN reported:



If she were to become Miss America, she would not be the first person with a major disability to earn the crown.  The 1995 Miss America was Heather Whitestone, who is hearing-impaired.

Autism and Murder

The Autistic Self-Advocacy Network has been sounding the alarm about family members who murder ASD children.  

Autism mom Jo Ashline writes in The Orange County Register:

It's not OK to kill your child - even if he has autism

Has the headline of my post gotten your attention?

Good. That's the whole point.

Now, for most of you, "It's not OK to kill your child" will illicit responses such as, "Of course it isn't!!" and, "Who in their right mind would think it's OK?!"

And yet, there's this strange phenomenon happening in our society whenever a news story breaks about another individual with autism dying at the hands of a parent. Rather than outrage, many people express feelings of sympathy for the perpetrator, which in many instances is the mother of the victim.

Yesterday a news story out of Grand Junction, Michigan, informed readers that Yodi Jackson, mother of 25-year-old Chad Jackson, who had autism, was arrested in connection with his 2011 death. It took investigators a full year but after gathering enough evidence, law enforcement charged Yodi yesterday with second-degree murder and second-degree felony abuse.

Now, let me remind you, a young man lost his life, and yet comments on the article all but justified Yodi's alleged actions.

...

My son, in all of his imperfect beauty, makes this imperfect mama feel blessed each and every day. He is my miracle and the world is a better place to live because of him, not in spite of him.
I am the rule, not the exception.

Which means that the moms and dads who end their autistic children's lives in a fit of anger, frustration, or as a "mercy killing" do not deserve our pity. These killings are just as wrong, just as deplorable, just as DISGUSTING as if it were any other child, and we need to knock it off with all of the earnest comments aimed at justifying the actions of these parents. Raising someone with autism, though challenging and difficult for many reasons, is an honor.

50 Cent Update

Rapper 50 Cent has taken down his offensive tweet ( “i just saw your picture fool you look autistic” )  The Huffington Post reports:

At the very least, Peete requested that 50 delete his insulting tweets. He has obliged, but many parents in the special needs community aren't satisfied. One mother, Miz Kp, whose 4-year-old son is on the autism spectrum, is waiting for a real apology. "In addition to giving an apology, 50 Cent needs to learn more about autism and the families affected by it. Lack of exposure can also breed ignorance," she wrote on her blog, Sailing Autistic Seas.

Many other autism bloggers have chimed in. Jeannette, aka Autism Mama, wrote "autism is known as the invisible disability," and then posted several photos of kids on the spectrum. Babble writer, Joslyn Gray, who has two children with autism reposted a video she made in April (for Autism Awareness Month) in response to the controversy. In real life, the video says, those with autism don't necessarily "look" like Rain Man or Forrest Gump -- that's only what movies would have you believe. In reality, as evidenced by her 3-minute photo montage, kids with autism look like any other kid: happy, smiley and adorable.

Some parents on Twitter have suggested boycotting 50 Cent's products and music. But Phil Evans, a 25-year-old with Asperger Syndrome thinks the rapper's misstep should be used as a lesson -- "Think before you talk." On his blog My Autistic Life, Evans wrote:

"Offending those who have autism may not have been intentional but when thoughts are released into such a public space, always consider what is being said when people could be affected by it."

Jeremy Robb writes at Technorati:

Why do I feel so strongly? Because while growing up my brother, who was never diagnosed with autism (they didn't do that sort of thing in the 70's and 80's) was often the outcast. He was even used as a punishment on the bus while going to Junior High (If you were a problem child, you had to sit next to my brother). It was frustrating, and I often got into disagreements with the bus driver (and did a lot of walking home) over this very thing.

People with autism are just like everyone else. They have feelings, they care about what others think of them. They want to have friends, socialize, and be "normal". They don't need prominent celebrities alienating them in a public forum, even if it's in response to inappropriate behavior.

Some have called on 50 Cent to apologize. Others have called for a boycott. Personally, a boycott for me wouldn't mean anything, as I never have and probably never will want to purchase his music anyway. But I do think something very powerful needs to be said here. Autism isn't a joke. I don't want it to be turned into another attack by kids. I don't want to see what happened to my brother happen to anyone. Ever.

50 Cent, I'm sure you don't care about what the autism community is saying about you. I'm sure you think you are safe in your record deals, fame, and fortune. Sure, you didn't make a racial slur, or attack anyone because of their sexual preference. But you did attack my two sons. And that's just not cool. Perhaps you should have thought before you wrote anything.

A TV Report on ABA

Another in KNBC-TV's series:

Stacy and Alan Vo spent thousands of dollars on speech and behavioral therapy for their son, Sean, who was diagnosed with autism. When they submitted their bills to the insurance company, they were denied. The Vo's say they "went through hell" trying to get their son's therapy covered. Now, a most plans will have to cover the intervention, called applied behavioral analysis, thought to be one of the most effective treatments for autism. John Cadiz-Klemack reports for the NBC4 News at 5 p.m. on July 2, 2012.

View more videos at: http://nbclosangeles.com.

See companion piece here.

More on the TRICARE Hearing

At The Huffington Post, Jeremy Hilton writes about the recent TRICARE hearing:

At the hearing, Dr. Vera Tait, Associate Executive Director of the American Academy of Pediatrics (AAP) and Dr. Geraldine Dawson, Chief Science Officer for Autism Speaks, both strongly asserted ABA as a critical medical treatment, citing decades of peer-reviewed scientific studies. Dr. Dawson concluded, "This is not a matter for further study. Action is needed to provide the quality of care our military families deserve and have earned."

Contrary to the DoD's position, the Office of Personnel Management (OPM) recently concluded, "There is now sufficient evidence to categorize ABA as medical therapy." This was welcomed news for millions of federal employees and offered renewed hope for military families seeking the same. However, at the Senate hearing on Thursday, OPM Director of Healthcare and Insurance, John O'Brien, seemed to backpedal, stating that just because OPM classified ABA as "medical therapy" didn't mean that it was "medically necessary." It was a slap in the face to our military families as OPM seemed to be attempting to provide cover for the DoD. At a time when the White House and the First Lady's initiative, Joining Forces, have consistently opened their arms to military families, it is ironic that two executive branch agencies simultaneously deny our military children the prescribed medical treatments they need.

So why are thousands of military families still being denied ABA?

Because TRICARE is subscribing to outdated, unscientific reports from an online database to argue that ABA is not their responsibility. A United States District Court in Florida rejected the same ABA report that TRICARE relied upon (the Hayes Report), when it ordered Florida's Medicaid program to include ABA as a medical treatment for autism. This is not news to the Berges, a retired military family who filed a class action lawsuit in the United States District Court of D.C. on behalf of military families. Sadly, TRICARE and DoD would rather defend their practices in federal court than ensure military dependents receive the care they need.

Holly Robinson Peete v. 50 Cent

"Autistic" is becoming a casual slur in popular culture, not to mention politics.  Holly Robinson Peete writes about the latest incident in an open letter to 50 Cent:

Since last night my twitter timeline is flooded with tweets and retweets about a response you posted to someone who insulted you. When I read it my heart sank. I thought maybe your account had been hacked. No such luck. Granted, his comment was completely out of line but your retort: “i just saw your picture fool you look autistic”- was so so disappointing. I mean, that’s your comeback?? And you didn’t stop there. You went on to joke about not wanting “special ed kids” on your timeline. Seriously, THIS is how you use your platform of 8 million plus followers??

I’ve met you in passing over the years and I know you are a bright, astute businessman and legitimate philanthropist so it is with a bit of sincere confusion that I ask you… Do you even know what autism is? And what exactly does “autistic” look like? Do you know how wildly prevalent autism is? 1 in 88 have it. That’s 1 in 54 boys. Families suffer a social stigma you will never know. It is a financial and emotional drain for millions, so our non-profit- HollyRod Foundation works hard to raise funds to help these families cope…

I hope you can see how what you might see as a benign insult-or not- was so randomly hurtful, immature and misinformed. Maybe you are naive or indifferent as to how many of your fans might be deeply and personally offended by your insult. At the very least-can you please delete it? If you’ve read your mentions today I am sure you have felt the wrath of autism parents. We are no joke. Neither is autism. We are not about to let you attempt to make “autistic” the new “R-word” under our watch.

Finally, this is my son Rodney Peete. He has autism. So I guess this is what autistic looks like? He is in special ed. He loves rap music and is a HUGE fan of yours. He’s a tremendous kid. He has to deal with so much trying to fit in. This isn’t helping.