Offit Returns to Colbert

Dr. Paul Offit has made a return appearance on the Colbert Report to talk about vaccines and autism:

The Colbert Report
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Latest "Miracle Cure" Is ... Camel Milk

Right after FDA issued a warning about "miracle cures" for autism, KSAT in San Antonio runs a story that uncritically touts the "magical" properties of camel milk.


 

A couple of years ago, "Respectful Insolence" took on this "magical" substance:

Again, I must point out that it is certainly not impossible that camel milk might have medicinal properties. It is, after all, made up of proteins, lipids, and a lot of other substances that might result in physiological effects. However, the evidence presented consists of testimonials, uncontrolled tiny pilot studies, and a lot of hand-waving. Moreover, whenever anyone makes claims that something like camel milk can treat a wide variety of diseases and disorders that do not share a common pathophysiology (example: acupuncture), it’s best to be very, very skeptical. Camel’s milk probably isn’t harmful. After all, people have been drinking it for millennia. However, the claims of miraculous medicinal properties are no different than most other claims for miraculous medicinal properties of various natural substances; i.e., they’re not particularly convincing and they’re being made by people selling camel milk.

FDA v. Autism Quackery

From the Food and Drug Administration:

According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism. Some of these so-called therapies carry significant health risks and include:

• “Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under medical supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.
• Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. It has not been cleared for autism, among other conditions.
• Miracle Mineral Solution. Also known as Miracle Mineral Supplement and MMS, this product becomes a potent chemical that‘s used as bleach when mixed according to package directions. FDA has received reports of consumers who say they experienced nausea, severe vomiting and life-threatening low blood pressure after drinking the MMS and citrus juice mixture.
• Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body, falsely offering “dramatic improvement” for autism symptoms.
• CocoKefir probiotics products. Product claims include being a “major key” to recovery from autism, but they are not proven safe and effective for this advertised use.

Coody offers some quick tips to help you identify false or misleading claims.

• Be suspicious of products that claim to treat a wide range of diseases.
• Personal testimonials are no substitute for scientific evidence.
• Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
• So-called “miracle cures,” which claim scientific breakthroughs and secret ingredients, may be a hoax.

The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products.

Beatings in Atlanta

Abuse of ASD kids and others with disabilities is far too common in public schools.In Atlanta, WSB-TV reports:

A teacher's video of a special education student being beaten in class has led to the arrest of a teacher's aide.

Parents said the video shows a paraprofessional assaulting students and they want her arrested.
It happened at Harper-Archer Middle School in northwest Atlanta in February.

Paraprofessional Alger Coleman was arrested, and faces child cruelty and simple battery charges.

Channel 2’s Tom Jones was going to interview the mother of the student Coleman is accused of abusing, but after she got a glimpse of the video she became emotional and couldn't continue.

The mother of another student who was mistreated was able to talk about what happened.

"I was heartbroken. I was very heartbroken," she said after learning about the abuse involving her 11-year-old autistic son by a teacher's aide. "I really couldn't believe the school was letting this go on," she said, not wanting to be identified because of the sensitivity surrounding the allegations.

While Coleman was charged, a second paraprofessional wasn't. That didn't sit well with the victims' parents. 

Bullying and Hate Crime

At The Washington Post, Petula Dvorak writes that parents of ASD kids fear bullying:

So imagine how alarming it is for those parents to hear about the case of an autistic boy at Chopticon High School in Southern Maryland who was allegedly bullied and assaulted by two teenage girls. Among the alleged incidents recorded on a cellphone: a knife being held to the 16-year-old’s throat, his repeated falls through an icy pond after he was encouraged to fetch a basketball and his efforts to have sex with his family’s dog at the behest of two girls he considers his friends. In fact, the boy told The Washington Post’s Ian Shapira that he forgives the girls, wants the charges dropped and doesn’t think they meant any harm.

One of the girls, who is 15, pleaded guilty to second-degree assault and was sentencedThursday to a juvenile lockdown facility for a maximum of six years. The other girl, 17-year-old Lauren A. Bush, has been charged as an adult with first-degree assault, child-pornography solicitation and false imprisonment and, if convicted, faces up to 80 years in prison.

...
Many kids with autism have a hard time in social situations, and they are very trusting. They are the ideal targets for bullies, something that a 2012 study published in the Archives of Pediatric & Adolescent Medicine showed when half the kids researchers watched were harassed. Autistic children are four times as likely be to targeted as kids without developmental disabilities.

Leigh Ann Davis has studied this since 1994 and has seen some horrific cases of bullying and physical, sexual and emotional abuse of kids with disabilities. But she’s relieved to see parents are starting to come to her to help deal with bullies and assert their children’s rights.

“It can become a hate crime issue when people with disabilities are treated differently, are less valued and are taken advantage of,” Davis said.

Licensing and ABA in California

A release from Consumer Watchdog:

Parents of autistic children scored a major victory in a California Court of Appeal decision issued late yesterday, which now bars state regulators and health insurers from discriminating against children on the basis of whether treatment providers hold state licenses. The state regulator's discriminatory policy led to long delays, and often denials, of treatment for autistic children.

Download the decision here: 

 http://www.consumerwatchdog.org/resources/courtofappealdecision.pdf

The lawsuit, filed in 2009 by the non-profit Consumer Watchdog and Strumwasser & Woocher LLP, was also the catalyst for a landmark state autism law, SB 946, authored by Senate President Darrell Steinberg in 2011.

The treatment at issue, known as Applied Behavioral Analysis (ABA), is the most effective treatment for autistic children, as yesterday's decision acknowledged.

Responding to concerns raised in the lawsuit, the California Legislature agreed with Consumer Watchdog and Strumwasser & Woocher LLP by passing SB 946, which clarified that health insurers must pay for ABA provided by individuals certified by a national board, even if they do not hold a state license. However, the legislation did not cover health plans for public employees enrolled in CalPERS and other state-sponsored programs.

Yesterday's California Court of Appeal decision now also bars the Department of Managed Health Care (DMHC) from allowing health insurers to deny treatment for autistic children of government employees, including police officers, firefighters, and school teachers, on the basis that such treatment can only be administered through state-licensed providers. As Consumer Watchdog and Strumwasser & Woocher LLP pointed out in the lawsuit, no state license currently exists for ABA therapists.

"Californians now finally have a definitive statement from the court that state regulators cannot allow health insurers to discriminate against autistic children merely because treatment providers do not possess a state license," said Fredric D. Woocher of Strumwasser & Woocher LLP, lead attorney in the case. "Families of firefighters, school employees and others covered by CalPERS-sponsored health plans will now be able to secure coverage for critical and effective treatment for autism. Health insurers can no longer deny coverage on the pretext that a treatment provider does not hold a state license, a practice which has been conclusively held to be illegal."

Read a letter from public employee unions, including the California Professional Firefighters, urging the court to end the DMHC's discriminatory rule: http://www.consumerwatchdog.org/resources/publicunionletter.pdf

From the opinion of the court:

 ABA is a time-intensive treatment. It is often prescribed for 26 to 40 hours per week. While there can be no doubt that the treatment plan for providing ABA to any autistic child must be established, modified, and supervised by a qualified expert in ABA, the evidence in this case indicates that the actual delivery of services to the child may be performed by a non-expert. A publication by the BACB suggests that a front-line behavioral technician need only be a high school graduate, who has subsequently received training in basic ABA procedures and demonstrated competency. (BACB, Guidelines: Health Plan coverage of Applied Behavior Analysis Treatment for Autism Spectrum Disorder (ver. 1.1, 2012) p. 27.) It appears that ABA, and similar behavior therapies, are somewhat unique among medical treatments in this respect. While the treatment plan must be created, modified, and supervised by a professional, a paraprofessional may actually deliver the services.

FDA Panel Would Ban Aversive Devices

John M. Grohol writes at PsychCentral:

America is one of the few countries where you can provide an electrical shock to a child and still call it “therapy.” Aversive therapy, to be specific.

It is a treatment so out of the mainstream of modern treatment that it is used by only one treatment center in the entire United States, the Judge Rotenberg Center in Massachusetts. It is an inhumane treatment used with little research evidence to support its long-term use or value.
And finally, after its use for decades, the U.S. Food and Drug Administration’s (FDA) Neurological Devices Panel on Thursday recommended their ban.

We’ve previously discussed the abuse and misuse of these devices, officially called Graduated Electronic Decelerators (GEDs). One former patients was able to make a simple phone call and impersonate a staffer, resulting in the shock of two other patients 100 times. This horrific incident resulted in Rotenberg’s founder, Matthew Israel, to step down. Then videos were released of the form of “treatment” Rotenberg regularly employs — shocking children into compliance.
...
The entire world looks upon the U.S.’s allowance of these devices to be used as a form of “treatment” on developmentally disabled children and teens in disgust.

After a hearing on Thursday reviewing all of the data and scant scientific evidence that exists for use of these devices, the Neurological Devices Panel of the FDA finally agreed. They recommended to the FDA that the use of the devices be banned in the U.S. While the FDA doesn’t have to follow the panel’s recommendations, they usually do.

Here is the report. 

Maryland: Mandate Regulation, License Requirement

Autism Speaks reports:

The Maryland Insurance Administration (MIA) has finalized new regulations that will require coverage of autism benefits, including applied behavior analysis (ABA), for many private plans as well as state employees. Related legislation that would establish a state licensing procedure for ABA providers, meanwhile, is headed to Gov. Martin O'Malley in May.

The new requirements will apply to individual, fully funded small and large group plans, the state employee health plan and coverage purchased through Maryland's health insurance marketplace created under the Affordable Care Act. The coverage includes a minimum of 25 hours weekly of ABA up to age six, and then 10 hours weekly through age 18.

In addition, psychological care and speech, occupational and physical therapy for the treatment of autism are covered.

However, the regulations require ABA practitioners to be licensed by the state. Because Maryland has no license, legislation was moved through the legislature to create the license and will be sent to the Governor next month. Autism Speaks and other advocacy organizations had urged the state to accept professional certification to speed up the process, but MIA insisted on the need for a state license.

Research and Everyday Life: A British Perspective

At The Conversation, Liz Pellicano of the University of London makes a point that Americans have also made:

In a project called A Future Made Together, funded by the charity Research Autism, we conducted the most comprehensive review of UK research into autism ever undertaken.
We consulted with more than 1,700 autistic people, their families, practitioners and researchers to understand what they thought of current autism research in the UK and where the funds towards autism research should be prioritised.

Our report acknowledged the many great strengths of autism research in the UK such as leading work in the area of cognitive psychology, stretching from the work of Sir Michael Rutter to Uta Frith. But it also noted considerable challenges in the years to come. While parents of children with autism were impressed by the amount of work that goes into autism research, they were not convinced that research had made a real difference to their lives.
One woman said:

I fill in all these questionnaires and do everything I can to help … but when it comes down to it, it’s not real life. It’s always missing the next step. It’s great you’ve done this research, you’ve listened to my views … but now do something with it.

It turns out that too many people feel that there is a huge gap between knowledge and practice. Research doesn’t seem to help their child catch the train by themselves or keep themselves safe. And it doesn’t say how to get autistic adults into jobs and keep them there.

The people we spoke to said that they don’t want to – or can’t – read about research in academic papers. They want to hear about research in accessible ways. And they want to see real changes for their child, or for the person they work with.

British academics haven’t been taking enough notice of real-life issues. Our analysis showed that the majority of UK research focuses heavily on “basic science” – neural and cognitive systems, genetics and other risk factors – rather than on research targeting the immediate circumstances in which autistic people find themselves, on services, treatments and interventions and education.

Is Jenny McCarthy "Pro-Vaccine"?

At The Ne w York Times, Frank Bruni takes down Jenny McCarthy:

[E]arlier this month, she said the craziest thing of all, in a column for The Chicago Sun-Times.

“I am not ‘anti-vaccine,’ ” she wrote, going on to add, “For years, I have repeatedly stated that I am, in fact, ‘pro-vaccine’ and for years I have been wrongly branded.”

You can call this revisionism. Or you can call it “a complete and utter lie,” as the writer Michael Specter said to me. Specter’s 2009 book, “Denialism,”looks at irrational retorts to proven science like McCarthy’s long and undeniable campaign against vaccines.
...
In 2007, she was invited on “Oprah” and said that when she took Evan to the doctor for the combined measles-mumps-rubella vaccine, she had “a very bad feeling” about what she recklessly termed “the autism shot.” She added that after the vaccination, “Boom! Soul, gone from his eyes.”

In an online Q. and A. after the show, she wrote: “If I had another child, I would not vaccinate.”

She also appeared on CNN in 2007 and said that when concerned pregnant women asked her what to do, “I am surely not going to tell anyone to vaccinate.”

Two years later, in Time magazine, she said, “If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the measles.” I’ve deleted the expletive she used before the second “measles.”

And on The Huffington Post a year after that, she responded to experts who insisted that vaccines didn’t cause autism and were crucial to public health with this declaration: “That’s a lie, and we’re sick of it.”

Adults with Autism in Massachusetts

In Massachusetts last week, the State House News Service reported:

The House unanimously passed a bill on Wednesday intended to improve educational opportunities and access to services for people with autism or other intellectual disabilities.

The legislation (H 4047) would also create a special commission to look at state policies dealing with individuals with autism, and allow families to set aside money tax free in savings accounts to pay and plan for the long-term care and housing of children with intellectual disabilities.
...
After the House voted 151-0 in favor, there was a smattering of applause from some members in the chamber. The bill would also expand eligibility for developmental services to individuals with IQs higher than 70, a current rule that Bradley said excludes many people with autism who have other developmental challenges they must overcome.

At The Boston Globe, Lucy Berrington explains the need for the bill:

For most of our adults with autism (or almost any other developmental disability), state services are a fantasy. Current eligibility for such services is not just inadequate. It is among the very worst in the country, possibly the worst, according to a review last year by the Disability Law Center, an independent advocacy organization in Boston. Moreover, if those autistic adults have a serious mental illness that under existing law makes them eligible for state support, they have been almost without exception denied it — because they are autistic.
...
Why is the need so acute? Currently, the Commonwealth is allowed by law to deliver services only to adults ages 22 and above who are intellectually disabled — but IQ is such a poor measure of functional life skills that the DLC struggled to find other states restricting eligibility to this standard. Most states include a broad range of developmental conditions. (It’s possible Massachusetts is more competitive by other measures, like quality of services.)

Consequently, when autistic people in Massachusetts age out of public education, often with marketable skills, they lose the structure and guidance that worked for them in school. This makes a successful transition to independent living and the workforce far less feasible. Likely outcomes include isolation, unemployment, homelessness, chronic health problems, and tremendous emotional and financial stress on families. Support organizations routinely hear from aging parents caring for autistic sons and daughters, terrified to die, because who will step in then?

NIH Seeks Comments on DSM-5

From the National Institutes of Health:

Subsequent to the publication of the DSM-5, the federal Interagency Autism Coordinating Committee (IACC) released a “Statement from the Interagency Autism Coordinating Committee Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (DSM-5)”. The IACC is a federal advisory committee, composed of federal and public members, that coordinates ASD-related activities within the United States Federal Government. The committee identified several ways in which the change in diagnostic criteria might affect access to diagnostic, treatment, and other services. The statement identifies several research questions related to the implementation of the new ASD criteria, including reliability and validity of the criteria and severity ratings, an evaluation of whether some individuals will see a change in their diagnosis, whether there is a need for new or revised screening and diagnostic tools and processes, and potential implications for the ASD community support and access to services.

The National Institutes of Health (NIH) have invested significantly ($192 million in fiscal year 2012) in biomedical, treatment and services research related to ASD. In an effort to further align its research priorities with the needs of individuals with ASD and their families, the NIH is soliciting further input about the implications of changes in ASD diagnostic criteria for autism research, as well as input into the potential for research to inform concerns and questions related to clinical practice and policy.

- See more at: http://grants.nih.gov/grants/guide/notice-files/NOT-HD-14-012.html#sthash.D3QRi3Jf.dpuf  

Nebraska Mandate to Become Law

A press release from Nebraska Governor Dave Heineman:

 Gov. Dave Heineman is expected to sign LB 254 into law on Monday. As a result of this law, some health insurance plans in Nebraska will provide coverage for screening, diagnosis and treatment of autism spectrum disorder in a child until the insured child is 21 years old.

“I’m looking forward to signing this autism bill into law,” said Gov. Heineman. “I will be signing this bill on behalf of families who meet the challenges of autism every day.”

The Governor will hold a public bill signing news conference on Monday, April 21 with autism advocates. The autism bill was sponsored by State Sen. Colby Coash of Lincoln, and had the backing of many autism advocacy groups and families.

“I care about this issue because I have seen the impact that this treatment can have on the future of a child with autism,” said State Sen. Coash. “Positive things can happen when they receive life-changing treatment. These families are strong willed and they never gave up on the bill, so I wouldn’t either. Today is a special day.”

One of the autism advocates is Vicki Depenbusch of Lincoln, who is the mother of an autistic son, Jacob. Governor Heineman met Jacob at his parent teacher conference held in 2010. For the last 4 years, the two have communicated regularly and attended events together. Governor Heineman appreciates his friendship with Jacob, who calls himself the “Governor’s Buddy.”
“This is a great day for Autism families in Nebraska,” said Depenbusch. “It gives us hope that our children will be the best citizens that they can be.”

The insurance coverage includes behavioral health treatment, such as applied behavior analysis, for autism. This type of treatment will be limited to 25 hours per week and the insurer will be able to review the treatment once every six months. 

Certain insurance plans will be exempt from providing the autism requirement, according to LB 254. Those include health plans sold in the individual or small group federally facilitated marketplace under the federal Affordable Care Act. Also, Nebraska is preempted from mandating coverage on plans governed by the federal Employee Retirement Income Security Act of 1974 (ERISA). Most private employer sponsored plans are ERISA plans.  

ERISA Suit Against Boeing

Autism Speaks reports on a suit in US District Court in Seattle.

Aerospace giant Boeing has been hit with a complaint in federal court by its Washington state employees who claim the company's denial of insurance coverage of applied behavior analysis (ABA) for their children with autism violates the federal Mental Health Parity Act. Filed by two families whose sons have autism, "C.S." and "D.Z.", the suit seeks certification as a class action on behalf of Boeing's 81,000 Washington-based employees.

...

The case has added significance because Boeing self-insures its employee health plan and therefore is regulated under federal ERISA law which is immune from state autism insurance reform laws, such as the law in its headquarters state of Illinois. The suit was filed by Seattle attorneys Ele Hamburger and Richard Spoonemore who have been winning a series of similar federal class action suits in Washington over ABA denials. The complaint alleges Boeing's denial of ABA benefits violates the 2008 Wellstone Domenici Mental Health Parity and Addiction Equity Act as well as its fiduciary responsibilities under ERISA.

Boeing does not expressly exclude ABA coverage in its health plan, but rather has its claims administrators exclude all coverage of ABA therapy through internal policies and restricted provider networks, the complaint alleges.

Mental Health Parity Regs in California

A release from California's Department of Insurance:

New mental health parity regulations have been approved by the Office of Administrative Law. These regulations drafted and proposed by the California Department of Insurance make sure insurance companies cover medically necessary treatment for children and individuals with autism.

"Approval of the mental health parity regulation will help end improper insurer delays and denials of medically necessary treatments for autistic individuals," said Insurance Commissioner Dave Jones. "This regulation provides clear guidance to the industry, stakeholders and consumers on the requirements of the Mental Health Parity Act from 1999."

Prior to these new regulations insurers were able to delay or deny medically necessary treatment for individuals with autism. The regulations further define the circumstances in which insurers must cover behavioral health treatments for autism. The regulations interpret and make specific the Mental Health Parity Act and gives more detailed guidance regarding the scope of the Act's provisions as they relate to autism treatment.

The Initial Statement of Reasons
Mental Health Parity Regulations

At California Healthline, David Gorn writes:

"We have all had frustration with the denials and delays," said Julie Kornack, senior public policy analyst at the Center for Autism and Related Disorders in Tarzana. "This really is making the state law and making the public policy clear."

With clear policy comes more certainty of coverage, she said. "Our hope is, [insurers] will see the laws are in place to ensure coverage."

According to advocates and officials at the Department of Insurance, delays often have come in the demand for more testing, particularly IQ testing.

"That practice creates significant delays," said Kristin Jacobson, president of Autism Deserves Equal Coverage, an advocacy group based in Burlingame. "It's an unnecessary test and it's irrelevant to needing treatment."

Ranking Medicaid Services

From United Cerebral Palsy:

Every year since 2006, United Cerebral Palsy (UCP) — an international advocate, educating and providing support services for children and adults with a spectrum of disabilities through an affiliate network– produces The Case for Inclusion, an annual ranking of how well state Medicaid programs serve Americans with intellectual and developmental disabilities (ID/DD). Individuals with ID/DD, including the aging, want and deserve the same freedoms and quality of life as all Americans.

Highlights:

The Best Performing States

1. Arizona
2. Michigan
3. Hawaii
4. Georgia
5. New York
6. South Carolina
7. Maine
8. Massachusetts
9. Ohio
10. Missouri

The Worst Performing States

42. Iowa
43. Utah
44. Illinois
45. Arkansas
46. Indiana
47. Tennessee
48. Oklahoma
49. Virginia
50. Texas
51. Mississippi

Facts about the Best Performing States

1. Top Performers are both big and small states in population – “big” population states include New York (3rd biggest) and Ohio (#7), Michigan (#8) and Georgia (#9) as well as “small” population states include Hawaii (#41) and Maine (#40).
2. Top Performers are both rich and poorer states in terms of median family income – “rich” states include Hawaii (9th richest) and Massachusetts (#5), and less affluent states include Arizona (#31), Georgia (#40), Michigan (#32), and South Carolina (#47).
3. Top Performers are high tax and low tax burden states – “high tax burden” states include Massachusetts (#10) and New York (#1) as well as “low tax burden” states include Arizona (#35), South Carolina (#42) and Georgia (#36).
4. Top Performers are big and low spending per person, served through the Home and Community Based Services – “big spender” states are New York (#7) and Maine (#6) and “low spender” states are Arizona (#49), Georgia (#40), and South Carolina (#48).

A Struggle in Michigan

Despite Michigan's insurance mandate, many families in the state still struggle for services.  In Grand Rapids, WXMI reports:

Hospitalization

In the Journal of Autism and Developmental Disorders, Aaron Nayfack and colleagues have an article titled "Hospitalizations of Children with Autism Increased from 1999 to 2009."

The abstract:

We performed a retrospective analysis of hospital discharges for children with autism, in comparison to children with cerebral palsy, Down syndrome, mental retardation/intellectual disability, and the general population. Hospitalizations for autism increased nearly threefold over 10 years, especially at the oldest ages, while hospitalizations for the other groups did not change. Leading discharge diagnoses for each age group in children with autism included mental health and nervous system disorders. Older age, Caucasian ethnicity, and living in a region with a high number of pediatric beds predicted hospitalizations associated with mental health diagnoses. These findings underscore the need for comprehensive clinical services that address the complex needs of children with autism to prevent costly hospitalizations.

From the discussion section:

This current study reported factors that placed an individual with autism at increased risk for hospitalization, but does not explain why these hospitalizations increased during the study period. One possibility is the rising prevalence of autism has been met by a decline in financial support for outpatient and community resources. In this scenario, overwhelmed parents, schools, and community providers of mental health resources may have been unable to meet the needs of these patients and this failure to treat adequately in the outpatient sector may have led to a direct increase in hospitalizations. A recent study by Mandell et al. (2012) adds evidence to support this argument. They found that the enhanced provision of respite care to caregivers
of children with autism led directly to a decrease in hospitalization.

 Mandell, D. S., Xie, M., Morales, K. H., Lawler, L., McCarthy, M., & Marcus, S. C. (2012). The interplay of outpatient services and psychiatric hospitalization among medicaid-enrolled children with autism spectrum disorders. Archives of Pediatric and Adolscent Medicine, 166(1), 68–73.

Research on Screening and Diagnosis

Karen Weintraub writes for the Connecticut Health I-Team:

Although the average age of diagnosis is nearly four-and-a-half, diagnoses can reliably be made around age 2, according to Amy Daniels, of the advocacy and science group Autism Speaks, which was founded by longtime Fairfield residents Bob and Suzanne Wright.

In a study, Daniels found gaps in the current system, which relies largely on pediatricians to flag kids for later diagnosis and treatment.

“There’s a lot of questions about what happens to these kids after they screen positive,” said Daniels.
...
Obviously a genetic screen or simple blood or urine test would be ideal, but that’s unlikely to ever be possible, researchers said. Autism has been linked to at least 500 genes so far, and each child’s genetic pattern is distinct. Researchers at Harvard University used a 55-gene panel to try to predict autism – but they were right less than 70 percent of the time, and were even less accurate among girls, according to their 2012 study.
...
Another group of researchers led by Rebecca Landa, head of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, found that children diagnosed with autism didn’t have good head control in infancy – lagging their heads behind when they were pulled to a sitting position, according to a 2012 study.

...

In a 2012 study, [Stephen] Sheinkopf showed that babies later diagnosed with autism had unusually high-pitched cries and also something called dysphonation – essentially a noisy signal in their cries. The differences were too subtle to be noticed without audio equipment, he said, so parents won’t be able to detect this on their own.

He’s now working to standardize the analysis, but isn’t sure crying will ever be a precise enough indicator to be the basis for a diagnosis.

“It’s unclear whether it’s going to be something specific or more generally indicative of risk,” he said.

Settlement on RI Sheltered Workshops

An April 8 release from the Department of Justice:

The Justice Department announced today that it has entered into a statewide settlement agreement that will resolve violations of the Americans with Disabilities Act (ADA) for approximately 3,250 Rhode Islanders with intellectual and developmental disabilities (I/DD). The landmark ten year agreement is the nation’s first statewide settlement to address the rights of people with disabilities to receive state funded employment and daytime services in the broader community, rather than in segregated sheltered workshops and facility-based day programs. Approximately 450,000 people with I/DD across the country spend their days in segregated sheltered workshops or in segregated day programs. The agreement significantly advances the department's work to enforce the Supreme Court's decision in Olmstead v. L.C, which requires persons with I/DD be served in the most integrated setting appropriate .

As a result of the settlement, 2,000 Rhode Islanders with I/DD who are currently being served by segregated programs will have opportunities to work in real jobs at competitive wages. Additionally, over the next ten years, 1,250 students with I/DD will receive services to help transition into the workforce.

“Today’s agreement will make Rhode Island a national leader in the movement to bring people with disabilities out of segregated work settings and into typical jobs in the community at competitive pay,” said Acting Assistant Attorney General Jocelyn Samuels for the Civil Rights Division. “As Rhode Island implements the agreement over the next ten years, it will make a dramatic difference in the lives of people with disabilities, businesses and communities across the state. We congratulate Governor Chafee and state officials for signing this agreement, as we believe that Rhode Island will be a model for the nation with respect to integrated employment for people with disabilities.”

“The filing of today’s consent decree is a critically important event in Rhode Island history,” said U.S. Attorney Peter F. Neronha for the District of Rhode Island. “It ushers in a new day of opportunity – opportunity for Rhode Island residents with intellectual or developmental disabilities to live, work and spend their recreational time alongside their fellow Rhode Islanders. It is an opportunity for this State to move forward; to recognize, finally, that we are better, stronger, when all of us – all of us –are interwoven in the fabric that is Rhode Island.”

Under the agreement, Rhode Island has agreed to provide:

• · Supported employment placements that are individual, typical jobs in the community, that pay at least minimum wage, and that offer employment for the maximum number of hours consistent with the person’s abilities and preferences, amounting to an average of at least 20 hours per week across the target population;
• · Supports for integrated non-work activities for times when people are not at work including mainstream educational, leisure or volunteer activities that use the same community centers, libraries, recreational, sports and educational facilities that are available to everyone;
• · Transition services for students with I/DD, to start at age 14, and to include internships, job site visits and mentoring, enabling students to leave school prepared for jobs in the community at competitive wages;
• · Significant funding sustained over a ten year period that redirects funds currently used to support services in segregated settings to those that incentivize services in integrated settings.

The ten year agreement will allow the state to ensure that the services necessary to support individuals with I/DD in competitive, integrated jobs will not disappear with a change in administration or legislative leadership. As a result of this commitment, the business community has already stepped up to partner with the state. The U.S. Business Leadership Network (USBLN), a network of Fortune 500 companies, and Walgreens will co-host a regional business summit in Rhode Island in June 2014 to explore how to improve those partnerships.

The agreement is the result of an ADA investigation that began in January 2013 into Rhode Island’s day activity service system for people with I/DD. The department, the state, and the City of Providence entered into an interim settlement agreement in June 2013. The interim settlement agreement focused on a single provider, which was one of the largest facility-based employment service providers in the state’s system, and a school-based sheltered workshop at a Providence, R.I., high school, which was a point of origin for many people entering the provider’s workshop.

The department continued its investigation of the statewide system, and in January 2014 issued findings determining that the statewide system over-relied on segregated services, to the exclusion of integrated alternatives, in violation of the ADA. The department found workers with I/DD in settings where they had little or no contact with persons without disabilities, and where they earned an average wage of $2.21 per hour. The investigation found that workers typically remain in such settings for many years, and sometimes decades. The department also found that students in Rhode Island schools were often not presented with meaningful choices to participate in integrated alternatives, such as integrated transition work placements and work-based learning experiences, which put students at serious risk of unnecessary postsecondary placement in segregated sheltered workshops and facility-based day programs.

Since June 2013, the state and city have provided supported employment services to people with I/DD transitioning from the original two facilities covered by the interim settlement agreement. Many of these individuals have now accessed jobs in typical work settings where they can interact with non-disabled coworkers and customers, and enjoy the same employment benefits as their non-disabled peers. Individuals have secured jobs at both locally owned and national companies. Because of the interim settlement agreement, Pedro , an individual who transitioned from the in-school sheltered workshop to the adult workshop, where he earned just 48 cents an hour, is now making minimum wage working at a restaurant. Peter , another former sheltered workshop employee who was earning approximately $1.50 per hour, now has a job earning more than minimum wage working for the state as a custodian at a hospital. Louis has gone from earning sub-minimum wages performing rote tasks at the sheltered workshop to a full-time position at a state hospital, where he uses his strong computer skills and passion for mathematics to generate Excel reports, record time sheets, and complete other office tasks.

For more information on these individuals and others, please visit the Department’s Faces of Olmstead website .
Please visit www.ada.gov/olmstead to learn more about the Division’s ADA Olmstead enforcement efforts, and www.justice.gov/crt to learn more about the laws enforced by the Justice Department’s Civil Rights Division

Letter on the Combating Autism Act Reauthorization

A number of disability groups has written to Senator Robert Menendez (D-NJ), Representative Chris Smith (R-NJ) and Representative Michael Doyle (D-PA):

We, the undersigned organizations committed to advancing equality of opportunity for people with disabilities, write with regard to the upcoming re-authorization of the Combating Autism Act (CAA). As you consider re-authorizing CAA, we urge you to incorporate the need for substantive changes to reflect the priorities of autistic people and their families. Congress should make common-sense changes that will ensure that federal funds are better used to benefit the community that this legislation is designed to serve.

We are urging a re-alignment of CAA to reflect a greater emphasis on the needs of autistic adults and services as well as a more inclusive process that better represents the priorities of autistic people and their allies. As we outline below, a larger proportion of federal autism research funding should be used for the purposes of research on services and the needs of adults; autistic people should have greater representation on the Interagency Autism Coordinating Committee (IACC); the IACC should be reorganized so that it can better fulfill its mandate to create a unified strategic plan for autism research and programs; and the name of the legislation should be changed to emphasize support for, rather than antagonism toward, autistic people and their families.

... 

The signers:

American Association of People with Disabilities
Association for Autistic Community
Association of People Supporting Employment First
Association of Programs for Rural Independent Living (APRIL)
Autism Society of America
Autistic Self Advocacy Network
Autism Women’s Network
Bazelon Center for Mental Health Law
The Jewish Federations of North America
Little People of America
National Council on Independent Living
National Coalition for Mental Health Recovery
National Disability Rights Network
National Down Syndrome Congress
National Federation of the Blind
Not Dead Yet
Quality Trust for Individuals with Disabilities
TASH

Disability Scoop reports:

Stuart Spielman of Autism Speaks, which has long-championed the bill in its current form, acknowledged that there is more work to be done, citing areas like transition and employment that merit greater attention, but insisted that all components of the current law are “vital.”
“We want to build on the successes of the Combating Autism Act,” said Spielman, the group’s senior policy advisor and counsel. “There’s a lot more that needs to be done but if you look at where things were at years ago, we have made progress.”

Menendez, who has traditionally been the measure’s chief Senate sponsor, is open to some reforms of the legislation which originated in 2006 but given that this is a reauthorization of an existing law, there are limits to how much change is realistic, an aide to the senator told Disability Scoop.

Lawmakers are looking to introduce a proposal for reauthorization in the coming weeks and are aiming for approval by August, the aide said.

A Caution About Screening

Many posts have mentioned the many autistic children who go undiagnosed for a long time.  But overdiagnosis is also a potential problem.  At The Atlantic, psychologist Enrico Gnaulati discusses the problem of false positives:

What gets lost in the debate is an awareness of how the younger in age we assess for problems, the greater the potential a slow-to-mature kid will be given a false diagnosis. In fact, as we venture into more tender years to screen for autism, we need to be reminded that the period of greatest diagnostic uncertainty is probably toddlerhood. A 2007 study out of the University of North Carolina at Chapel Hill found that over 30 percent of children diagnosed as autistic at age two no longer fit the diagnosis at age four. Since ASD is still generally considered to be a life-long neuropsychiatric condition that is not shed as childhood unfolds, we have to wonder if a large percentage of toddlers get a diagnosis that is of questionable applicability in the first place.
...

Several years ago, Gary L. Freed, MD, chief of the Division of General Pediatrics at the University of Michigan, initiated a survey of physicians listed as pediatricians on state licensure files in eight states across the United States: Ohio, Wisconsin, Texas, Mississippi, Massachusetts, Maryland, Oregon, and Arizona. According to the survey, 39 percent of state-identified pediatricians hadn't completed a residency in pediatrics. And even for those who had, their training in pediatric mental health was minimal.

Currently, the American Academy of Pediatrics estimates that less than a quarter of pediatricians around the country have specialized training in child mental health beyond what they receive in a general pediatric residency. The latest data examining pediatricians who have launched themselves into practice reveals that 62 percent of them feel that mental health issues were not adequately covered in medical school. These figures hardly inspire widespread confidence as regards relying on pediatricians to accurately diagnose ASD.In a 2010 study, 45 percent of graduate students in child psychology had little exposure to coursework in child/adolescent lifespan development.

This brings me to my own cherished profession: child psychology. What does survey data tell us about the current training of child psychologists that speaks directly to their ability to separate out abnormalcy from normalcy?

Poring over the numbers of a 2010 study out of the University of Hartford in Connecticut, I discovered that 45 percent of graduate students in child psychology had either no exposure to, or had just an introductory-level exposure to, coursework in child/adolescent lifespan development. It is in these classes that emerging child psychologists learn about what is developmentally normal to expect in children.

It would appear that the education and training of a sizable percentage of pediatricians and child psychologists leaves them ill-equipped to tease apart the fine distinction between mild ASD and behaviors that fall within the broad swath of normal childhood development.

Insurance Developments in Nebraska and Georgia

The Omaha World-Herald reports Nebraska mandate legislation:

Parents of children with autism and parents of children with rare digestive disorders prevailed in the eleventh hour of the Nebraska Legislature's session.

State senators voted Wednesday to advance legislation mandating insurance coverage of intensive autism therapy and providing state help to pay for the specialized formula needed by children with the digestive disorders.

Both proposals were amended into Legislative Bill 254 after the bill's original contents were stripped out. It then advanced to the final stage of consideration.

The proposals have been on a roller coaster ride for the past two years. Bills to add insurance mandates to state law traditionally face resistance in the Legislature.

The autism proposal would require coverage for therapy including applied behavior analysis, a treatment that has been shown to help autistic children learn to function better in the world, said State Sen. Colby Coash of Lincoln, who introduced the autism measure.

See a more detailed version of the story here.

In Georgia, The Gwinnett Daily Post reports on a legislator who has switched from opposition to fervent support of mandate legislation:

Despite the death of her autism bill on the last day of this year’s legislative session, Sen. Renee Unterman is continuing her push to advance insurance coverage for children with the disorder.

The Buford woman, who heads the Senate Health Committee, held a press conference with Lt. Gov. Casey Cagle and other senators to discuss the rising prevalence of autism last Wednesday, which was Autism Awareness Day in Georgia.

...

Activists used the occasion to highlight recently released Centers for Disease Control and Prevention data showing that one in 68 children are diagnosed as on the autism spectrum disorder. The group, which included other local Sens. David Shafer, Don Balfour and Fran Millar, discussed initiatives aimed at reducing the disorder’s impact on the state.

Survey on Autism and Vaccines

A release from the National Consumers League:

According to a survey released today by the National Consumers League (NCL), the nation’s pioneering consumer organization, adult Americans lack sufficient information about the safety of vaccines and the risks of failing to vaccinate for highly contagious diseases. Despite scientific studies clarifying that vaccines are not linked to autism in children, 33 percent of parents of children under the age of 18 and 29 percent of all adults continue to believe “vaccinations can cause autism.” According to public health experts, the failure to vaccinate children has recently led to outbreaks of highly contagious, preventable, and sometimes deadly diseases, like whooping cough.

NCL’s survey of 1,756 U.S. adults, conducted online by Harris Poll in August and September, also revealed that 50 percent of parents are aware of the study that linked autism to childhood vaccinations, but only half of these parents are aware that the study has since been discredited and retracted.

“The anti-vaccination movement that has gained so much momentum in recent years is doing real, measurable damage to the health of our communities,” said Sally Greenberg, Executive Director of NCL. “Vaccinations for diseases that had been wiped out until recently are being rejected by a small but significant number of parents, causing some of these virulent diseases to emerge once again. Those who choose not to vaccinate put the rest of us at risk.”

Examples of the re-emergence of diseases caused by failure to vaccinate include the following, according to a recent Centers for Disease Control and Prevention (CDC) report:

• An outbreak of mumps on the Ohio State University campus infected 69 individuals;
• 27 people were infected with mumps after an outbreak at Fordham University; and
• New York City recently warned of a measles outbreak that infected16 individuals. According to the CDC report, “The increase in measles cases in the United States in 2013 serves as a reminder that imported measles cases can result in large outbreaks, particularly if introduced into areas with pockets of unvaccinated persons. During 2013, nearly two-thirds of the cases came from three outbreaks. Transmission occurred after introduction of measles into communities with pockets of persons unvaccinated because of philosophical or religious beliefs."

According to NCL’s survey, while most Americans understand the benefits of vaccination, many still see it as an issue of individual choice. More than 4 in 5 (82 percent) adults agree that vaccinations help reduce health care costs, and 72 percent are concerned about the drop in vaccination rates in the United States. However, 60 percent say they respect the decision of parents when choosing whether or not to vaccinate their children.

Survey findings

Only two in five (39 percent) of parents surveyed describe themselves as being extremely or very knowledgeable about how vaccines work. But, among those, 35 percent also believe that vaccinations can cause autism.

Who parents trust for information about vaccines:

• 81% health care providers
• 37% Web-based sources
• 32% the Centers for Disease Control and Prevention
• 22% family
• 10% child’s school

Nearly a quarter of parents (23%) trust physicians on TV like Dr. Oz and Dr. Gupta to relay medical information to the public, 11 percent trust morning shows like the ‘Today Show,’ and 7% trust talk show hosts to relay medical information.

Nearly two in five adults (37 percent) who are somewhat or not at all knowledgeable about how vaccines work say they trust the doctors on TV to relay medical information to the public. Less than a third (29%) of adults who are extremely or very knowledgeable feel the same.

On mandatory vaccination policies:

• A majority of adults (87%) and Parents (81%) support mandatory vaccinations for school-aged children.
• 76% of parents say that they think parents or guardians should have the final say about whether or not children should be vaccinated (vs. 64% of all adults).

For more information about the survey, contact the National Consumers League.
###
About the National Consumers League
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Its mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.

About the Survey

The national survey was conducted online by Harris Poll on behalf of the National Consumers League among 1,756 U.S. adult Americans (ages 18 and older), of whom 993 are parents of children under 18, in August – September 2013. This online survey is not based on a probability sample and therefore no estimate of theoretical sampling error can be calculated. For complete survey methodology, including weighting variables, please contact the National Consumers League.

The Chili's Controversy, Journalism, and "A Terrible Condition"

AP reports on the Chili's controversy:

To honor National Autism Awareness month, the restaurant chain had planned on donating a portion of its sales on Monday to the National Autism Association. The group, based in Attleboro Falls, Mass., says its focus is on safety issues for the autistic community. But a section of its website also states that it believes vaccinations can "trigger or exacerbate autism in some, if not many, children."

In another section of its site, the group says that "informed consent is critical and each parent should have the freedom and information necessary to make the best decision for their child."

The belief that the battery of vaccinations given to infants could lead to autism was spurred by a British study that has since been retracted. Repeated studies have discredited the link, but the issue has remained a point of contention in some circles. Seth Mnookin, a professor at the Massachusetts Institute of Technology who wrote "The Panic Virus" about the fears triggered by the now debunked study, noted that the National Autism Association has a lengthy history of connecting vaccines with autism.

Wendy Fournier, president of the National Autism Association, said in a phone interview that she was "shocked" by the backlash and "this group of individuals that is trying to pigeonhole us as anti-vaccine."

Fournier noted that the National Autism Association's doesn't have any programs related to vaccines.

"We haven't even looked at that page — it's been up there for years," she said of the section on the group's site that says vaccines can trigger autism.

"There has always been a lot of debate," Fournier said. "It hasn't been answered whether or not vaccines can cause autism."

For now, she said no changes would be made to the site because that might be criticized as well.

At The Los Angeles Times, Michael Hiltzik writes:

"Cause-related marketing" -- the term should give you a clue to what it's really all about -- has become an inescapable part of the marketing and ad campaigns of countless consumer businesses. An essential factor in these campaigns is that the consumer "participate" by making a purchase, a portion of which is paid over to the chosen charity.

Philanthropy experts are troubled by these campaigns. For one thing, the best-marketed charities, not necessarily the most deserving, garner the most attention. Another drawback is that when customers' donations are made automatically at the cash register, they don't do much, or anything, to examine the charity they're helping. Why should they? They're not actually paying for the donation.

The Chili's case shows the other side of that coin: The merchants don't feel much need to scrutinize those charities either. Chili's may merely have thought, "Autism Awareness Month = marketing opportunity." There's no evidence that its executives bothered to educate themselves about autism itself, though the chain said its intent was "not to express a view on the medical or scientific positions related to autism, but rather to support the families affected by autism." (We assumed they didn't really intend to fund vaccine deniers.)
...

UPDATE: I have been taken to task, properly, for referring to autism above as "a terrible condition for its sufferers and their families." That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives. "I'm a good reporter because I have incredible focus," says Mike Elk, the superb labor reporter for In These Times, who identifies himself as having Asperger's syndrome and appreciates the diversity of those in the autistic spectrum. Those seeking to know more should turn to the Autistic Self Advocacy Network, whose president, Ari Ne'eman, serves on President Obama's National Council on Disability. [emphasis added]

Yet Another Purported Risk Factor: Paternal Obesity

The number of purported risk factors for autism has become bewildering.  MedPage Today reports:

Paternal obesity was strongly associated with increased risk for several autism spectrum disorders in children, according to a population-based study.

Children of obese fathers had an increased risk for developing autistic disorder and Asperger disorder, and the risk grew with increasing body mass index (BMI), wrote Pål Surén, MD, MPH, of the Norwegian Institute of Public Health in Oslo, and colleagues, in the May issue of Pediatrics.
...
"We had thought that maternal obesity may somehow be related to autism, but this is the first time anyone has looked at paternal weight, and the findings suggest we may have gotten it wrong," commented Andrew Adesman, MD, chief of developmental and behavioral pediatrics at Steven & Alexandra Cohen Children's Medical Center of New York in Lake Success, N.Y.

Adesman, who was not involved in the current research, pointed out that it's not clear from either of the studies if obesity plays a causal role in autism. Even if future studies did demonstrate causality, the impact of parental obesity on autism spectrum disorders is likely to be small, he added.

"Most of the children with autism in this study were not born to obese fathers and most of the children born to obese fathers did not develop autism," he told MedPage Today. "The risk (for autistic disorder) increased from 15 per 10,000 cases (children with normal-weight dads) to 25 in 10,000 cases (children with obese dads), which is still very, very low."

The National Autism Association and Chili's

There are a number of national autism organizations, and someone unfamiliar with the issue might not understand the differences among them.  The Huffington Post reports:

Enjoying a Triple Dipper at Chili's on Monday? Some of your money will be going toward anti-vaccination efforts.

On April 7, the restaurant chain will be donating 10 percent of customers' checks to the National Autism Association in honor of National Autism Awareness month. On its website, the NAA claims that vaccinations can expedite autism in "some, if not many, children."

Though the anti-vaccination movement has gained steam in recent years, more and more data shows that anti-vaccination efforts can result in outbreaks of preventable diseases like measles. The Center for Disease Control has repeatedly disputed the idea of a causal relationship between vaccinations and the development of autism in children.

On its website, the NAA doesn't make a definitive statement about vaccinations and autism, instead directing users to the National Vaccine Information Center, a nonprofit organization. In his book Denialism, journalist Michael Specter writes that the "NVIC is the most powerful anti-vaccine organization in America, and its relationship with the U.S. government consists almost entirely of opposing federal efforts aimed at vaccinating children."

Chili's has already felt backlash from its decision to donate proceeds to the NAA ,issuing a defensive statement to its nearly 4 million Facebook fans on Friday.

...
UPDATE: 5:15 P.M. EST -- Chili's has canceled the event after negative feedback from customers.

“While we remain committed to supporting the children and families affected by autism, we are canceling Monday's Give Back Event based on the feedback we heard from our guests," a Chili’s Grill & Bar spokesperson said to The Huffington Post in an email. "We believe autism awareness continues to be an important cause to our guests and team members, and we will find another way to support this worthy effort in the future with again our sole intention being to help families affected by autism."