Ron Paul and Autism

Philip Klein writes at The Washington Examiner:

During a Friday Ron Paul town hall meeting, a red-headed boy identifying himself as autistic and "almost" 10 asked the Texas congressman what he would do to protect kids with autism as president.

It was an interesting challenge for Paul given his views -- the pure libertarian response would be that taking care of kids with autism is not the job of the federal government, but obviously no candidate wants to appear to be a jerk to an autistic kid.

As you can see in the video below, Paul responded that the best thing a president could do for kids would be to protect liberties, and reassured that health services for children and the elderly would be preserved from his deep budget cuts for a transitional period.

DSM-V is Coming

The American Psychiatric Association will publish the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V) in May 2013.  Fox News reports:

“If we don’t loosen it a little bit, I suspect that some of these high-functioning kids may actually either get shifted into a different diagnosis,” said Dr. Thomas Frazier, who treats children with autism at the Cleveland Clinic Children’s Hospital. “So, for example, they might move to a new diagnosis called social communication disorder.”

Frazier said he is also worried about children who are already classified, and how the reclassification could affect the educational assistance they receive at school.

“Your educational classification really indicates what kind of services and accommodations you're going to get at school,” he said. “And autism is one of the highest educational classifications; so many people with autism get a significant amount of services through their school. I think the worry by a lot of parents is that ‘if my child loses that classification what happens?’ And we don’t know what’s going to happen yet.”

At Cato, Walter Olson worries that DSM-V will lead to an increase in claims under ADA and other laws.

Services in Connecticut

The Connecticut Mirror reports on the Hospital for Special Care's plan to open an autism center.  Even though the center will not open until later in the winter, the hospital immediately got an inquiry from an autism dad.  The story highlights the extreme need for services in Connecticut.

In medicine, psychiatry, social work, psychology, teaching -- "You name it, and we don't have people trained at all in any of these fields to work with people with autism spectrum disorder," said Lois Rosenwald, executive director of the Connecticut Autism Spectrum Resource Center.

"You name it, we need it," she said.

Rosenwald said part of the problem stems from a lack of a funding source to cover autism-related services, giving providers little motivation to get trained in addressing autism. There's no dedicated state department that covers it, although the Department of Developmental Services now has a division of autism services.

A recent state law requires health insurance to cover diagnosis and treatment of autism spectrum disorders, but the requirement doesn't apply to self-insured plans that are common at large companies and cover about half of those with private insurance in the state.

Autism often falls through the cracks between mental health and developmental disabilities, some advocates say. Until recently, children with autism only qualified for DDS services if they had an IQ below 70. "Parents would call our office in tears saying, 'You hate to wish this, but I wish my child had an IQ of 69,'" Milstein said. [emphasis and link added]

"Therapy Bag" Story Continues to Grow

School officials in Mercer County, Kentucky, are learning that few forces are as powerful as an autism mom.  WHAS in Louisville reports:

Oversight of New York Nonprofit Providers

Ross Buettner writes in The New York Times about New York providers of group homes for the developmentally disabled.  The story starts with the Federation of Multicultural Programs of Brooklyn, which has filed for bankruptcy twice, seen executives face embezzlement charges, hired a totally inexperienced chief executive, and amassed more citations than any other licensed provider.

An analysis by The New York Times of state inspection data from 2004 to 2010 found that the federation had been cited 27 times; most providers of similar size were cited no more than twice.

Like a spouse trapped in a bad marriage, however, the state never sought to extricate itself. It continues to pay the federation about $20 million a year in Medicaid money.

The relationship underscores the degree to which New York State has given control of its system to nonprofit providers, who receive more than $5 billion a year in Medicaid money to house and care for developmentally disabled people.

The problem stems from hasty decisions made four decades ago, when New York faced a court order to stop warehousing developmentally disabled people in huge institutions. The state turned to then-small nonprofit groups, many led by parents of developmentally disabled children, to open group homes quickly.

 State officials saw the groups as allies, in need of support more than supervision. And as the organizations matured into multimillion-dollar enterprises, the state’s oversight system did not keep pace.

As a result, from the 1970s until this fall, the nonprofit providers, unlike nursing homes or hospitals, never faced fines when their care was found lacking. The state conducts inspections of their facilities, but the visits are rarely a surprise and are intended to be a collaborative learning experience.        

Inclusion Films

Richard Verrier writes at The Los Angeles Times:

Founded by Joey Travolta, older brother of actor John Travolta, Inclusion Films trains adults with developmental disabilities in the nuts and bolts of filmmaking -- from writing the script to building sets and using film and editing equipment -- with the goal of finding them jobs in the entertainment industry or some other field.

Students with autism, cerebral palsy and Down syndrome are trained by working cinematographers, set designers, actors and other professionals who are active in the industry. 

"The filmmaking process is a great teaching tool about life," said Travolta, 61. "A lot of our students aren't going to be filmmakers and may never work in the film business, but they are going to be able to go into the workplace and have a sense of what it's like to be on the job. This builds their self-confidence."

Based in Burbank, Inclusion Films works with Easter Seals of Southern California to provide jobs to graduates of the program and is in discussions with various studios to set up internship programs for the students, Travolta said. Many of the participants are referred by the nonprofit regional centers that contract with the California Department of Developmental Services to provide job training and other services for special-needs people.

 "We've seen phenomenal things happen with the students in this program," said Mike Clark, executive director of the Kern Regional Center, which in the last three years has referred about 70 students to Inclusion Films' program in Bakersfield. "They see themselves as people who can do something with their lives."

"Therapy Bag" and Bill on Restraint and Seclusion

The case of Chris Baker in Kentucky -- the ASD student stuffed in a "therapy bag" -- is getting attention from national (CNN.com) and international (The Guardian) media.  At The Age of Autism, the Autism National Committee is seeking support for federal legislation on restraint and seclusion

Last week, U.S. Senator Tom Harkin introduced the Keeping All Students Safe Act, S.2020, to protect students nationwide from dangerous restraint and seclusion.  As the GAO (U.S. Government Accountability Office) has found, restraint/seclusion are dangerous, resulting in deaths, injuries, and trauma to children nationwide.  WE ARE SEEKING LETTERS IN SUPPORT OF THE BILL FROM PARENTS THAT CAN BE SHARED WITH SENATOR HARKIN’S STAFF AND PERHAPS OTHER SENATE STAFF.   WE ARE ALSO INTERESTED IN STORIES OF CHILDREN WHO RESTRAINED OR SECLUDED AND WHO MIGHT HAVE BEEN HELPED IF THE BILL WAS LAW.   You do not have to have a story to send a letter.  Please email Jessica Butler, Congressional Affairs Coordinator, Autism National Committee, atjessica@jnba.net if you have a story or think the bill would have helped your child, or if you would like to send a letter in support of the bill (even if you do not have a story).  Please feel free to forward and share with others....Please contact me if you are a parent who would like to write a letter of support or if you have a story.  You do not have to have a story to write a letter.  My email isjessica@jnba.net .  For those on yahoo groups and other systems that cut off email addresses, my email address is jessica (at) jnba-dot-net
Thank you,
Jessica ButlerCongressional Affairs CoordinatorAutism National Committee21 years of advocating for the rights of people with autism and related disabilitieswww.autcom.orgemail: jessica@jnba.net  [jessica (at) jnba.net]

Autism: A Review of 2011

At The Huffington Post, Cara Santa Maria reviews research and reporting on autism, including such topics as prevalence, genetics, the vaccine theory.

In the United States, we've seen a fifteen-fold increase in autism diagnoses over the past two decades. In fact, it's currently estimated that almost 1% of US children have an autism-spectrum disorder (ASD), while the rates in US adults are largely unknown. 
...
The causes of autism, however, remain unclear. Genetic factors, dysfunctional cell-to-cell communication, and even environmental factors such as teratogens (chemicals that cause birth defects) have all been implicated. Indeed, ASDs may be as unique as the people who live with them, and a one-size-fits-all explanation may never be sufficient. One thing we know for certain is that there has never been a legitimate link found between autism and vaccine use. The science simply does not support childhood vaccination as a causal factor.

In a special issue of Discover Magazine released earlier this year, five intriguing yet largely speculative causes of the disorder are discussed. From an autoimmune hypothesis to a model of impaired mitochondria, these provocative explanations challenge conventional wisdom, and may, in fact, open the door to a new way of thinking about ASDs. We have learned a lot about autism recently, and with each new discovery, the picture grows clearer.

MIND Institute Billboards

In California, Capitol Weekly reports:

A statewide billboard campaign has been launched focusing on the UC Davis MIND Institute's efforts to develop improved treatments for children with autism spectrum disorders. 

The billboards depict a young child and state: "Making breakthrough discoveries in the causes of autism," and then provide contact information for the MIND Institute, which was founded in 1998 to coordinate research into autism and other disorders.

The billboards were made possible through the support of the California State Outdoor Advertising Association (CSOAA), which contributed $50,000 to the enterprise.

The collaboration received praise from California Senate President Pro Tem Darrell Steinberg, D-Sacramento. ...

The Sacramento-based UC Davis MIND Institute is an interdisciplinary research center where parents, community leaders, researchers, clinicians and volunteers collaborate to study and treat autism and other neurodevelopmental disorders. The institute has conducted major research into autism, Tourette syndrome, fragile X syndrome, chromosome 22q11.2 deletion syndrome and attention-deficit/hyperactivity disorder (ADHD).

Additional information about the institute, including previous presentations in its Distinguished Lecture Series, is available on the web at mindinstitute.ucdavis.edu.

Autism Research and Policy: A Family's Journey

Autism Research and Policy: A Family's Journey
Presenter: Louis Vismara, Ph.D., and Laurie Vismara Ph.D., BCBA-D
Affiliation: UC Davis MIND Institute
Date: August 5, 2011
Length: 1:16:13
Summary: Keynote Address from 2011 Summer Institute.

Recently posted on YouTube:

 

Petition Against Over-Medication in New York

A recent post described over-medication in New York State institutions for the developmentally disabled.  The Autistic Self-Advocacy Network has an online petition against the practice.  From the petition:

A recent New York Times expose documented the extensive overmedication of people with disabilities in residential service-provision. According to the Times, people with developmental disabilities in group homes in New York are more likely to be given Ativan, an anti-anxiety drug that also serves as a tranquilizer, than multivitamins. In many cases, psychotropic medication is prescribed as a chemical restraint to control behavior, even when it lacks any therapeutic purpose. Data from the National Core Indicators project, a national database run by the Human Services Research Institute and the National Association of State Directors of Developmental Disability Services, shows that the percentage of people with developmental disabilities receiving psychotropic medications is much higher than the percentage who have the co-occurring mental health conditions that might justify their use. This is a critical issue, and it is imperative that New York's Office for People with Developmental Disabilities and State Legislature take action to address it.

Over-Medication in New York

Danny Hakim of The New York Times continues to report on New York State's residential institutions for the developmentally disabled.  His latest report focuses on the use of psychotropic drugs.

Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field. ...

The drugs can have serious consequences. Risperdal, the second most frequently prescribed, was developed to treat psychotic disorders and has been approved for controlling aggression among people with autism. But its side effects can be extreme, including breast growth in adolescent boys, which in a small number of cases require mastectomies.

And even the use of the drugs to control behavior is questionable. A 2008 study published in the medical journal The Lancet found that psychotropic drugs like Risperdal were less effective at treating behavioral outbursts than placebos.

Dr. Roy Q. Sanders, who is the medical director of the Marcus Autism Center in Atlanta and has worked in New York, said, “I tell people all the time that the medications are really blunt tools when it comes to making substantial differences in behavior in developmentally disabled individuals.”

"Therapy Bag" and the Social Media Response

Social media are responding to the case in Kentucky where a school used a duffel bag for seclusion and restraint. Laura Shumaker writes at The San Francisco Chronicle:

Lydia Brown, an 18-year-old university student who also has autism , learned about Chris from a story on Landon Bryce’s blog ThAutcast.com and launched the petition on Change.org calling on the school to fire the teacher and institute a comprehensive training program in the school district.

More than 7,000 people have joined the campaign in the first 24 hours.
“Clearly there is anger over the alleged treatment of this boy, and the growth of this campaign is quite remarkable,” said Benjamin Joffe-Walt, director of communications for Change.org, the world’s fastest growing online campaigns platform. “Armed with only a laptop and without any funding or support, an autistic 18-year-old has recruited some 10,000 supporters in less than 24 hours, with dozens joining every minute.”

There is no doubt that teachers and aides that work with students with autism spectrum disorders need training (Click HERE to learn about the program at Alliant Universtiy, and HERE to learn about the program at Dominican University.)

Working with students with autism can be confounding and exhausting, but it can also be incredibly rewarding. Thanks to petitions like Lydia’s, more teachers and aides will be better equipped to work meaningfully with our kids and reap those rewards.

To learn more about Change.org, CLICK HERE.To sign Lydia’s petition, CLICK HERE.To learn about Landon Bryce and ThAutcast, CLICK HERE.Need to explain autism to someone? CLICK HERE for a primer.

Michigan Mandate: Another Try

AP reports:

Michigan lawmakers plan another attempt at passing legislation related to insurance coverage for autism in 2012, a key legislative leader said Thursday.

Senate Majority Leader Randy Richardville, a Republican from Monroe, said legislation is expected to be introduced early next year. It's likely to have changes from autism coverage legislation that died in the Senate in 2010.

Previous efforts to mandate that health insurers provide coverage for certain autism therapies have run into opposition from business and insurance groups. They say mandating coverage would raise the cost of employer-sponsored health insurance, and that's a major reason why efforts for such a mandate have been stalled in Michigan.

More than half the states have adopted laws that require insurers to provide autism coverage, and supporters say it's time for Michigan to join them.

"Families in Michigan have worked so hard for several years to try and get this passed," said Lorri Unumb, a state government affairs official with Autism Speaks, a nationwide advocacy group. "To be frank, they are desperate for some sort of relief."

Appropriations

Autism Speaks reports:

Autism Speaks hailed Congress’ vote on a new federal budget bill that appropriates over $230 million for continued autism research, including the first appropriations under the newly reauthorized Combating Autism Act (CAA).

The funding includes $47.7 million for the Health Resources and Services Administration (HRSA), $21.38 million for the national Centers for Disease Control and Prevention (CDC) and funding to be allocated through the National Institutes of Health (NIH). The portion NIH designates for autism research is expected to be close to the prior level of $161 million. Congress also approved a $5.1 million appropriation to continue autism research within the U.S. Department of Defense.

“We're seeing significant appropriations under the CAA in a most difficult fiscal climate, showing bipartisan understanding within Congress of the national public health importance of autism,” said Peter Bell, executive vice president for programs and services. “The funding through the Defense Department is also gratifying, raising the total allocated to this vital program over $35 million.”

 The CAA was reauthorized for another three years by Congress and signed by President Obama on Sept. 30. The funding approved Saturday by Congress maintains the new appropriations for HRSA and CDC at their FY2011 levels, withstanding cuts that affected many other federal programs. Both the HRSA and CDC appropriations could be subject later in the year to an across-the-board 0.189 percent reduction affecting all health programs.

The appropriation for the Defense Department’s Autism Research Program (DoD-ARP) for Fiscal Year 2012 was cut slightly from previous levels, but the program was continued as part of federal autism research efforts. DoD-ARP is administered as a Congressionally Directed Medical Research Program (CDMRP), similar to current programs for breast, prostate, and ovarian cancers. Research that is funded under CDMRP is peer-reviewed, benefits from the direct input of consumer advocates, and is targeted to the most innovative, promising research in the field.

"Therapy Bag" -- More on the Kentucky Case

Ensuring national attention, AP is covering the story of a Kentucky school that stuffed a 9-year-old autistic boy, Chris Baker, into a bag.

At a meeting with school district officials, the bag was described as a "therapy bag," [Sandra] Baker said, though she wasn't clear exactly what that meant. She said her son would sometimes be asked to roll over a bag filled with balls as a form of therapy, but she didn't know her son was being placed in the bag. She said school officials told her it was not the first time they had put him in the bag.

So far, almost 700 people have signed a petition on the website change.org. Lydia Brown, an autistic 18-year-old Georgetown University freshman from Boston, said she started it after reading a story about Chris. 

"That would not be wrong just for an autistic student. That would be wrong to do to anyone," Brown said.

Advocates for the autistic were outraged.

Landon Bryce of San Jose, Calif., a former teacher who blogs about issues related to autism, said the school's treatment of Chris was "careless and disrespectful."

"A lot of the damage that we do to students with all kinds of disabilities is by treating them as though they deserve to be treated in a way that's different from other people," Bryce said.

Baker said she heard different accounts about her son's behavior that day.

Baker stopped short of calling for the dismissal of school employees, but she said they should be suspended. They also need more training, she said.

In Kentucky, there are no laws on using restraint or seclusion in public schools, according to documents on the state Department of Education's website.

Nirvi Shah reports at Education Week:

A U.S. Senate bill filed late last week would limit physical restraint and locked seclusion of students—measures often used with students with disabilities who are considered out of control, harmful to themselves or others, or in need of being calmed.

Iowa Democratic Sen. Tom Harkin's "Keeping All Students Safe Act," is similar to a bill filed by Rep. George Miller, D-Calif., in April. The U.S. House has previously passed the bill, but it wasn't taken up by the Senate. However Rep. Miller's bill has bipartisan support. Sen. Harkin's bill has no cosponsors, at least not yet.

Among other things, the bill would: ban the use of physical restraints except in emergency situations; prohibit physical restraints that affect a student's primary means of communication; forbid putting seclusion or restraint into a student's individualized education program or IE; require states to collect data on the use of the measures, and ask schools to meet with parents and staff after a restraint is used and plan interventions that would prevent their use in the future.

Followup to the LA Times Series

A Monday post included a response to the Los Angeles Times series on autism.  Reporter Alan Zarembo follows up:

First, the articles do not “conclude that we should abandon looking for environmental factors.” In fact, I highlight the importance of environmental factors in causing autism. Here is what I wrote (http://www.latimes.com/news/local/autism/la-me-autism-science-sidebar-html,0,5744660.htmlstory ):

“As in many medical conditions, the most likely scenario is that genes create a susceptibility, while environmental factors — which scientists broadly define to include such things as diet, drug use, radiation exposure and stress levels — act as triggers.”

 Clearly, it would be very useful to identify these triggers—and to see if such exposures are on the rise.

Second, it was not by mistake that the series did not mention the latest twin study. You correctly note that I wrote about it earlier — and anybody who follows the link you provided will see that the analysis breaking down genetic and environment contributions was not accepted by many other scientists I interviewed. The authors themselves noted that their calculations were subject to a wide margin of error and therefore could have led them to the wrong conclusion.

Interestingly, another study I reported on in August (http://articles.latimes.com/2011/aug/15/health/la-he-autism-20110815) found greater risk than previously thought for children with an autistic sibling -- a risk on par with the concordance rates reported for fraternal twins, which is what one would expect for a disorder with a strong genetic component.

Bad Case of Seclusion and Restraint in Kentucky

From Kentucky comes a story about seclusion and restraint. WKYT in Lexington reports:

A young Kentucky boy and his mother have become the center of a national petition after she says a school employee put her son in a bag.

Sandra Baker says her nine-year-old son Chris, who has autism, was placed in the bag as punishment for acting out at school in Mercer County. Since then hundreds of people from across the country have signed a petition in support of the family....

You can read the online petition by following this link:http://www.change.org/petitions/petition-to-board-of-education-of-mercer-county-kentucky

A Web Ad

An amateur web ad in favor of the Caring for Military Kids with Autism Act

Seclusion in Nebraska

An earlier post dealt with a case of seclusion in Lincoln, Nebraska.  The Lincoln Journal-Star offers an update:

A Lincoln couple is appealing a federal lawsuit they filed against Lincoln Public Schools over the education plan for their son, who has autism.

U.S. District Judge Laurie Camp ruled in favor of LPS in the lawsuit filed by Chrissy and Matt McNair.

The couple alleged the district violated federal education law by not adopting a plan devised for their then 10-year-old son, Luke, by experts at a research institute associated with Johns Hopkins University.

Camp found LPS complied with federal law because it took the plan provided by the institute into consideration, even though it didn't adopt all of its recommendations.
But the McNairs argued the district refused to implement the key recommendation: Quit taking Luke to an isolation room when he acted out. The doctors found that Luke liked being by himself and acted out so teachers would send him to isolation.

The McNairs pulled Luke out of LPS and enrolled him at a private school called Prairie Hill in Roca. That school used the plan and had no problems, they said. The lawsuit had asked LPS to pay for past and future tuition to the private school. Because of the cost, the McNairs are now home-schooling Luke, who is 11.

The Minnesota Blues

Minnesota currently does not have an insurance mandate, though a state representative has introduced one, with the support of Autism Speaks. At The Pioneer Press, Christopher Snowbeck reports:

Blue Cross and Blue Shield of Minnesota will begin dropping coverage in most cases for a costly therapy for autistic children as early as Jan. 1 - a change that has patient advocates worried about losing coverage through a key state program, too.

The Eagan-based health insurer said Monday that the coverage change will be phased in over next year and affect about 200 children who have been receiving a treatment known as early intensive behavioral intervention. The treatment cost averages about $80,000 per year....

In February 2009, the Blue Cross Blue Shield Association published a report on the effectiveness of early intensive behavioral intervention based on Applied Behavior Analysis. Although the therapy was described as one of the "most commonly cited and best-researched interventions" for children diagnosed with autism spectrum disorders, the report concluded that the quality and consistency of study results for the therapy were weak.

"No conclusions can be drawn from this literature on how well (the therapy) works," the report states.

Advocates such as [Amy] Dawson [of the Autism Law and Advocacy Center] have a starkly different view.

Not all children with autism spectrum disorder currently receive intensive behavioral therapy, Dawson said, adding that the treatment won't allow all autistic children to achieve complete independence.

"But anyone who has had a kid benefit from it can tell you all about the results," she said. "My own son has gone from completely nonverbal with an IQ below 50 to an IQ above 100 and now having one of his problems being that he talks too much."

A recent article in Research in Autism Spectrum Disorders concludes that that data "strongly support" the effectiveness of early intervention.


See also a report by the Agency for Healthcare Research and Quality.

A Reponse to the LA Times Series

Earlier posts included passages from the Los Angeles Times series on autism.  Dr Irva Hertz Picciotto of UC Davis has a reply:   

Alan Zarembo is right that there is substantial variability in rates of diagnoses, and that we can't confuse diagnoses with the actual incidence of disease.

Nevertheless, impressions are not the same as a scientific analysis. I published the first quantitative analysis of how much of the increase in diagnosed cases in California could be explained by artifacts (changes in criteria by DSM; earlier ages at diagnosis; inclusion of milder cases) using the California data, which has a long enough history to provide data over many years, and the numbers simply do not add up (Hertz-Picciotto & Delwiche 2009). Combining my results with those of Peter Bearman, it appears that about half of the increase in diagnoses in California are due to changes in diagnostic criteria or practices, but that still leaves about a 3-fold increase that is not explained, and that was as of 2007. Diagnoses in California have continued to rise both in areas with low rates and in areas with high rates. Zarembo is interested in explaining the geographic variation, but the explanations for variation spatially are not necessarily the explanations for variation over time.

This quote is particularly misleading: 

No study points to an environmental reason for the worldwide explosion in cases over the last two decades.

Given the slow pace of genetic change in large populations, genes can't account for the surge either.

That suggests the explanation for the boom lies mainly in social and cultural forces, notably a broader concept of autism and greater vigilance in looking for it.

First, the wording is telling: 'an' environmental reason. There will not be a single reason for the increase, just as there is no single cause of autism. It is far too complex. But the logic that leads to the third sentence escapes me. How many studies have been done of environmental causes? Very few!!! And of these, most were extremely poor studies - very small samples, or lacking individual-level data (just trying to draw correlations - a study design that is generally not even published in the top epidemiology journals). Is it surprising we've uncovered few leads? The funding for environmental factors has been paltry - a mere $40-50 million in the last 10 years, while more than $1 billion has been spent on genetics. So to conclude that we should abandon looking at environmental factors and turn to social/cultural factors is nonsensical.

Moreover, to the extent the increase is due to diagnostic differences, we need to find explanations for both the increasing numbers of diagnoses and for the autism that has been around "all along." In fact, data are emerging about quite a number of environmental factors. Just this year, major papers were published suggesting a role for traffic-related air pollution (Volk et al 2011), for maternal periconceptional nutrition (Schmidt et al 2011), and for maternal metabolic conditions (Krakowiak et al, in press). Earlier papers have indicated associations with pesticides (Roberts et al 2008; Eskenazi et al 2008).

With regard to social factors, most of the cases in our autism study (The CHARGE Study, which is one of the largest to date) are low functioning, and to have been eligible for California services, they had to have three functional disabilities, meaning they are not the high functioning types of ASD or Asperger's that are often described in discussions about the broadening of what we are calling autism.

With regard to genetics: the largest study to date looking at twins shows that 38% of concordance is due to genetics and 58% to shared environmental factors. This completely overturns the widespread assumption that has driven research for the last decade or more, which was that autism heritability was over 70%. (The paragraph in one of the series' articles about twin studies is out-of-date).

That mistake is most curious, since Zarembo earlier wrote about the more recent twin study 

The Jersey Tsunami

An earlier post described the approaching "tsunami" of autistic adults in New Jersey. The Bergen Record picks up the story, pointing out a problem with client-centered financing:

The Alpine Learning Group, a school for children with autism in Paramus, operates an adult program for its graduates.

"The cost of the program exceeds what we're allowed to bill through DDD, [NJ's Division of Developmental Disablities] " said Bridget Taylor, Alpine's executive director. "Our staff is one adult for every two participants, because these are very challenged clients who have significant support needs. We're talking about aggressive, self-hurting behaviors that require complex behavior management. The cost is close to $50,000 per participant. Typically what we get from a participant's state budget is around $28,000."

The difference has to be made up through fund raising; the division won't allow programs for adult disabled individuals to charge clients fees beyond what the state pays. In most cases, the clients have little or no income anyway beyond their disability checks from the federal government.

Both Quest and Alpine are looking to expand their programs, and several other non-profits that serve other people with developmental disabilities have proposed new programs for adults with autism. But the new way the state funds such agencies is making that difficult to do.

The state will no longer provide agencies with any funds to create programs. Instead, the division now gives families a budget with which they can pay for the services they select. By putting control of the spending in the families' hands, the state's theory goes, community agencies will have to create programs that provide the most needed services since those are the ones that families will choose to pay for.

"We don't want to tie money to a slot at a program; we want to tie it to a person," explained Dawn Apgar, the state's deputy human services commissioner and interim executive director of the division. The policy is across the board, affecting programs for all disabled adults, not just those with autism. "We want people to have portability. If you're not happy there and you want to go somewhere else, you can."

But the state's funding policies leave programs in a classic Catch-22:he only way for a new program to get start-up money is to sign up enough clients to pay for it. But agencies find it almost impossible to get families to sign up for a program that doesn't exist yet.

Diagnostic Substitution or True Increase?

Jillian Jorgensen writes at The Staten Island Advance:

Eden II Executive Director Dr. Joanne Gerenser, who has worked with the autism community for 30 years, said part of the increase is clearly explained by the widening spectrum. Asperger syndrome -- which typically involves social challenges but does not affect language or intellectual capabilities -- was added to the spectrum in 1994, bringing in an entire group of people previously not counted.

"The second variable that's clear, is that services appear to be more readily available with an autism diagnosis," Dr. Gerenser said. "I think that some people may be getting a diagnosis for autism for that reason, if their kids were on the fence of being diagnosed with something else."

But the increase also feels genuine, Dr. Gerenser said. The enrollment at Eden II has grown from 15 to 20 children at the start to 150 school-aged children now. "And the list of people waiting for services continues to grow," she said.

That growth, she said, can't be explained by the widening spectrum.

"Eden II serves those kids who are most significantly autistic," she said. "This can't be explained by that expansion into Asperger's, because those kids wouldn't be referred to me." 

For previous posts on the possibility of a true increase in autism prevalence, see here and here.

ABA and the Health Care Law

Previous posts have dealt with coverage of ABA in the new federal health care law. Now, from Autism Speaks:

Autism Speaks, the nation's largest autism advocacy organization, expressed optimism with today’s announcement by the U.S. Department of Health and Human Services (HHS) permitting states to maintain coverage for autism behavior therapies, such as Applied Behavior Analysis (ABA), as part of their essential health benefits package when provisions of the new federal health care law take effect in 2014.

“HHS has committed to giving states flexibility in determining benefits,” said Lorri Unumb, Esq., vice president for state government affairs. “Entering 2012, 29 states representing 70 percent of the U.S. population have already made that decision and it is to require coverage of autism benefits. Today’s guidance gives states the freedom to maintain the coverage they have designed for their citizens without having to defray costs for 'excess' benefits.”

Under the Patient Protection and Affordable Care Act of 2010, the HHS was directed to determine an "essential health benefits" package that would be offered in the individual and small group markets, both inside and outside of the Affordable Insurance Exchanges created under the law that begin operation in 2014. HHS, in its decision announced today, gave the states the flexibility to choose from four types of health plans in establishing a benchmark for what services should be covered.

"Autism Speaks is optimistic this will enable states to continue to provide comprehensive autism therapies, such as ABA, as part of their essential health benefits package," Unumb said. In the 29 states which have enacted autism insurance reform, Unumb said, most of the four plans would cover behavioral health treatments, such as ABA.

“We have worked hard to give families the access they need to necessary therapies and have succeeded in a majority of states,” said Unumb, who also teaches autism law at George Washington University Law School. “We intend to work hard to protect those successes and to fight for autism insurance laws in even more states in 2012 to end insurance industry discrimination against families dealing with autism.” 

Gingrich on the Vaccine Theory

Newt Gingrich has weighed in on vaccines and autism.


From To Save America (rev. ed., 2011, pp. 142-143):

But perhaps no anti-scientific argument is more dangerous today than the claim put forward by radical environmentalists, most notably Robert F. Kennedy Jr., that childhood vaccinations can cause autism. Numerous peer-reviewed studies have disproved this connection. Moreover, the Lancet, a prominent British journal that published a 1998 study confirming a vaccination-autism connection, recently retracted the study, whose findings had already been repudiated by ten of its thirteen co-authors.

Yet some parents, worried by these rumors, have stopped vaccinating their children, endangering public health.

Note, however, that some on the right have also embraced the vaccine theory. Most notable is Gingrich's former colleague, Rep. Dan Burton (R-IN).

The Missing Millions

Alan Zarembo concludes his Los Angeles Times series by looking at undiagnosed autism among adults.  The article starts by describing the case of Ben Perrick, identified in David S. Mandell's study of a hospital in Pennsylvania.

The researchers found 13 other patients with unrecognized autism in the Norristown hospital — about 10% of the residents they evaluated. It was a sign of how medical standards and social attitudes toward the disorder have shifted.
Over the last two decades, estimates of the autism rate in U.S. children have climbed twentyfold. Many scientists believe the increase has been driven largely by an expanded definition of the disorder and more vigorous efforts to identify it.
...
What happened to all the people who never got diagnosed? Where are they?
Like Perrick, who died in 2009, some spent their lives in institutions. Mental hospitals have largely been emptied over the last four decades, but the remaining population probably includes about 5,000 people with undiagnosed autism, said David Mandell, a psychiatric epidemiologist who led the Norristown study.
Many more are thought to be in prisons, homeless shelters and wherever else social misfits are clustered.

But evidence suggests the vast majority are not segregated from society — they are hiding in plain sight. Most will probably never be identified, but a picture of their lives is starting to emerge from those who have been.

They live in households, sometimes alone, sometimes with the support of their parents, sometimes even with spouses. Many were bullied as children and still struggle to connect with others. Some managed to find jobs that fit their strengths and partners who understand them.

If modern estimates of autism rates apply to past generations, about 2 million U.S. adults have various forms of it — and society has long absorbed the emotional and financial toll, mostly without realizing it.
...
The only study to look for autistic adults in a national population was conducted in Britain and published in 2009. Investigators interviewed 7,461 adults selected as a representative sample of the country and conducted 618 intensive evaluations.
The conclusion: 1% of people living in British households had some form of autism, roughly the same rate that the U.S. Centers for Disease Control and Prevention estimates for children in America today.

The British study found it didn't matter whether the adults were in their 20s or their 80s. The rate of autism was the same for both groups.

"That would seem to imply the incidence has not changed very much,” said Dr. Terry Brugha, a professor of psychiatry at the University of Leicester who led the study. He added that the findings were not conclusive and more research is needed

LAT Takes on ABA

In the latest installment in his Los Angeles Times series on autism, Alan Zarembo takes a highly critical look at ABA:

Statewide, at least 75 firms, some with long waiting lists, offer ABA in a variety of styles. The cost -- often $50,000 a year or more for a single child -- has been covered primarily by taxpayers up to now.

In October, California passed a law requiring private health insurers to include coverage for ABA in their policies. More than two dozen other states have similar requirements, the result of relentless campaigning by parents and their advocacy groups.

Yet for all the belief and investment in ABA, important questions remain about its effectiveness and how best to use it.

Researchers have established that the therapy can improve behavior, language and intelligence test scores. But no scientist using the gold standards of medical research has reproduced the success rate reported by Lovaas, who died last year.

Moreover, nobody can explain why some children respond to treatment and others make little progress, even after thousands of hours. It is also unclear which elements of ABA are responsible for the gains, how many hours a week are needed and for how long, and whether children who receive the therapy fare any better in adulthood than those who do not.

Complicating the picture is that scientists and providers themselves have taken the therapy in a variety of new directions. Although the principle remains the same -- long hours, day after day, in early childhood -- there has been little research on how various approaches compare.

  

"Nonprofits" and Home Care in New York

The New York Times reports on a Medicaid problem in the the Empire State:

Every day across New York State, thousands of part-time workers visit the homes of developmentally disabled people to teach them simple tasks, like grooming or how to take a bus.        

For their work, which requires no special credentials, the employees typically earn $10 to $15 an hour.
But when the nonprofit organizations that employ those workers bill the state, they collect three and four times that amount — with some having received as much as $67 an hour.

Spending on this little-known home care program, called Community Habilitation, has soared in recent years, creating multimillion-dollar surpluses at some nonprofit agencies and eye-popping salaries and benefits for those who run them.
And it helps explain how New York’s costs of caring for developmentally disabled people have ballooned in recent years, creating the nation’s most generous system of Medicaid-financed programs, with little scrutiny of its efficiency or results.

Autism, Colleges, and Accommodations

As previous posts have indicated, the number of college students with ASD will probably grow substantially.  Many of them may seek accommodations, and colleges are wrestling with the issue in the context of other disabilities.  Andrew Petersen writes at The Wall Street Journal:

Schools are required to extend "reasonable accommodations" for students with documented disabilities—including psychological ones—to comply with the federal Americans with Disabilities Act. 

 But there's hand-wringing among university administrators and faculty about how to support college students with mental health issues while making sure young adults progress academically. One of the goals of college, after all, is to prepare students for the working world. And not every boss may be OK with a blown deadline for a critical client report, no matter the reason. Professors also want to make sure they're being fair to all students. 

 "There's the danger that we take too much care and when they hit the real world that same kind of support isn't there," says David Cozzens, dean of students and associate vice president of student affairs at the University of Wyoming in Laramie. Some formal accommodations, like additional test time, are fairly standard across universities and apply to students with physical and learning disabilities, too. But, schools diverge widely on formal accommodations for flexibility with assignment deadlines, class attendance and participation. Some schools leave it up to individual instructors. Others intervene more directly on students' behalf.

See:

• "Preparing Students With Autism Forcollege, And Preparing Colleges For Students With Autism"
• Autism Transition Handbook
• NavigatingCollege.org