Autism Advisory Task Force in California

A notice from California's Department of Managed Health Care about a meeting tomorrow, February 1, from 10 AM to 4 PM:

The Department of Managed Health Care (DMHC) has convened the Autism Advisory Task Force called for in Senate Bill 946 authored by Senate President Pro Tem Darrell Steinberg (Chapter 650, Statutes 2011). The Task Force is charged with developing recommendations regarding medically necessary behavioral health treatment for individuals with autism or pervasive developmental disorder (collectively referred to as “autism”), as well as the appropriate qualifications, training and education for providers of such treatment.

Specifically, the Task Force will focus on:

• Scientifically validated Interventions that have demonstrated clinical efficacy and measurable treatment outcomes
• Patient selection, monitoring and duration of therapy
• Qualifications, training and supervision of providers
• Provider network adequacy
• Requirements that unlicensed providers must meet in order to obtain licensure from the state.

The 18-member Task Force is comprised of a diverse group of researchers, providers, advocates and experts charged with developing recommendations for state policy makers on behavioral health treatment for people with autism. The names and biographies of the Task Force members. The work of the Task Force will be grounded in evidence-based research about interventions that have measurable treatment outcomes.

All Task Force meetings will be open to the public and information about the meetings, including agendas, meeting schedules and informational materials are available on the DMHC’s website.

Members of the public may attend the Task Force meetings in-person or participate by phone by calling the following toll-free phone number: 1-800-309-2350, Conference ID: 288476 (spells AUTISM). The Task Force meetings will be audio-recorded and those recordings will be posted on the DMHC’s website.
The DMHC will submit the Task Force report to the Governor and Legislature by December 31, 2012, at which time the Task Force will disband.

ASAN and Autism Society on DSM-V

ASAN and the Autism Society have issued a joint statement on DSM-V:

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5.
The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5's criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5's final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, "First, do no harm." As such, it is essential that the DSM-5's criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case - namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument - no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Ari Ne'emanPresident ofAutistic Self Advocacy Networkaneeman@autisticadvocacy.org

Scott BadeschPresident ofAutism Societysbadesch@autism-society.org

Scientific American on DSM-V

Ferris Jabr writes at Scientific American:

What is in question is how many of the DSM-5 criteria a patient must meet to receive a diagnosis—too many and the manual excludes autistic people with fewer or milder symptoms; too few and it assigns autism to people who don't have it. Since the 1980s the prevalence of autism has dramatically increased worldwide, especially in the U.S. where the Centers for Disease Control and Prevention estimates that nine per 1,000 children have been diagnosed with ASD. Many psychiatrists agree that the increase is at least partially explained by loose criteria in DSM-IV.

"If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS," says Catherine Lord, one of the members of the APA's DSM-5 Development Neurodevelopmental Disorders Work Group. "The specificity is terrible. We need to make sure the criteria are not pulling in kids who do not have these disorders."

Three studies published between last summer and this month conclude that the DSM-5 criteria for ASD are too strict, but that a few small changes would make them appropriately inclusive. One might think that the APA would conduct such research themselves, but studies that explicitly compare DSM-IV and DSM-5 criteria are not an official part of the revision process. Rather, researchers who are not helping revamp the DSM, but were interested in how the new edition will change psychiatric diagnosis, decided to find out for themselves.

In a sidebar, Jabr runs the numbers:

[W]e asked astronomer and Hubble Fellow Joshua Peek of Columbia University to code a computer program that would calculate the total possible ways to get a diagnosis of autistic disorder in DSM-IV and the total possible ways to get a diagnosis of autism spectrum disorder in DSM-5. You can do the math by hand too, if you like: It all comes down to factorials. The DSM-IV criteria are a set of 12 items in three groups from which you must choose 6, with at least two items from group one and at least one item each from groups two and three. The DSM-5 criteria are a set of 7 items in two groups from which you must choose 5, including all three items in group one and at least two of the four items in group two. Peek's program crunched the numbers: there are 2027 different ways to be diagnosed with autism in DSM-IV and 11 ways to be diagnosed with autism in DSM-5.

One might think that those statistics make it absurdly easy to qualify for a diagnosis of autism in DSM-IV and incredibly difficult to meet the criteria for autism in DSM-5, but those numbers alone don't tell you anything unless you understand how common each symptom of autism is in the general population. Symptoms of autism are not randomly distributed throughout the population and the symptoms do not cluster together in random combinations. Research in the past decade has shown that some symptoms appear together much more often than others. In fact, that is one of the main reasons that the APA has consolidated the DSM-IV criteria for autism into fewer, denser and more accurate criteria in the DSM-5. The idea is that the DSM-IV criteria allowed for too many possible combinations, many of which rarely occur; the DSM-5 criteria, in contrast, better reflect the most common combinations of symptoms.

Tax Credit Proposal in Michigan

Jay Greene writes at Crain's Detroit Business:

Critics of an autism bill stalled in the Michigan Legislature for more than three years never have disputed data that show early intervention to treat autistic children could save taxpayers millions of dollars in future health care and educational costs.

What opponents of the bill -- including the Michigan Chamber of Commerce, Michigan Manufacturers Association and Small Business Association of Michigan -- object to are the mandates that would require health insurers to cover treatment costs.

A compromise in the works finds common ground by offering a tax credit -- or expense offset -- to insurers.

The compromise planned by Gov. Rick Snyder, who supports the autism legislation; Senate Majority Leader Randy Richardville, R-Monroe; and Republican leaders in the Senate and House may give supporters of the bills the best chance of passage in years, said Dave Meador, a leading business proponent of the bill and CFO of DTE Energy Co. in Detroit.

While the insurance mandate is still in Senate Bills 414 and 415, health insurers would be allowed to claim a credit against the new 1 percent health insurance claims tax that went into effect last October, according to a Dec. 16 report by the state Department of Treasury.

Virginia ADA Agreement

A release on Thursday from the US Justice Department:

The Justice Department today announced that it has entered into a comprehensive settlement agreement that will transform the Commonwealth of Virginia’s system for serving people with developmental disabilities, including intellectual disabilities, and will resolve violations of the Americans with Disabilities Act (ADA). Under the ADA and the Supreme Court’s landmark decision in Olmstead v. L.C., individuals with disabilities have the right to receive services in the most integrated settings appropriate to their needs. The ADA and Olmstead require states to provide people with disabilities the opportunity to live and receive services in the community instead of in institutions.

...
The agreement expands community-based services so that Virginia can serve people with developmental disabilities in their own homes, their family’s homes or other integrated community settings. The agreement will provide relief for more than 5,000 Virginians with developmental disabilities and will have an impact on thousands more individuals receiving developmental disability services. Over the next 10 years, Virginia will expand community services by providing home and community-based Medicaid waivers to nearly 4,200 individuals; providing family supports to 1,000 individuals currently living in the community; and expanding and deepening its crisis services, including a hotline, mobile crisis teams and short term crisis stabilization programs. This expansion will provide individuals the opportunity to transition successfully from its five state-operated training centers to community settings that can meet their needs and prevent new people from being unnecessarily institutionalized.

The agreement will also expand opportunities for individuals with developmental disabilities to live independently through a fund for housing assistance and enhanced coordination of existing rental assistance programs. Virginia will also offer other supports for community living, including supported employment. Finally, Virginia will implement a comprehensive, robust quality and risk management system to ensure that people are safe, receive the supports and services they need, and have opportunities for real community inclusion. The agreement is court enforceable, and compliance will be monitored by an independent reviewer with extensive experience in developmental disability systems.

"Therapy Bag" and Viral Issues

At WebProNews, Abby Johnson reports on the Kentucky "therapy bag" case:

Lydia Brown, an autistic college student at Georgetown University, saw the story and decided to create a petition onChange.org. The petition, which has received over 180,000 signatures already, calls for the school to take action against the teacher involved as well as comprehensive training for all school personnel.

However, as with many viral stories, the Christopher Baker case has generated a fair share of controversy. Some people from the autism community have spoken out in defense of the school saying that therapy bags are often used for treating autistic individuals.

Another debatable issue is in regards to how the bag was used. Christopher’s mother says he was put into the bag for misbehaving, which raises concerns over the use of seclusion and restraint in the treatment of individuals with disabilities.
Amy Dawson, the Founder of the Autism Advocacy & Law Center LLC, told us that seclusion or restraint could be harmful to any child but especially those with disabilities since he or she may not be able to fully understand what is happening.

At this time, the school board has said that it has concluded its investigation and is moving on. Sandra Baker, who now has legal support from The Gallini Group in Alabama and Chevalier Ginn Shirooni & Kruer in Kentucky, is continuing to fight the incident.

 

Autism in Ventura County

In Ventura County, California, The Acorn reports:

Fran Arner-Costello, director of programs and services at the Ventura County Special Education Local Plan Area (SELPA), said children with autism make up about 11 percent of the 16,000 students with disabilities served by the county’s school districts.

“These are kids who meet the special education eligibility guidelines, which are different from a medical diagnosis of autism,” Arner-Costello said. “It’s not a mental health diagnosis, so the guidelines are not as stringent. It’s more of an educational designation.”

As of December 2011, Ventura County SELPA provides special education services to 1,780 children and adults from infants to age 22 under the autism designation— 7 percent more than the 1,659 people with autism it served in 2010.

“Some of the kids may have just a few characteristics—mild social and communication deficits,” Arner-Costello said. “Then some may be considered full-scale autistic, with extreme symptoms and more intensive social, cognitive and developmental needs.”
...


Steven Graff, director of clinical services at the Tri-Counties Regional Center (TCRC)—the agency through which the state of California provides services and support to people with developmental disabilities in Ventura County—said the rise may be attributed to a number of factors.

“First of all, we’re much better at diagnosing autism now,” Graff said. “We’re catching it younger and identifying it more accurately. That’s going to count for a huge percentage of the increase.”

Graff said environmental factors— such as pesticides, herbicides and other chemicals that can affect fetal development—also may contribute to an increase in autism prevalence.

“It’s not legitimate to say it’s rising only because of one thing,” Graff said. “If you’re looking at a minimum of three or four factors, there’s going to be a certain amount of overlap. It’s most definitely a multifactorial question.”

Still, Graff said the prevalence of autism in Ventura County has “absolutely increased.”

California Legislative Action

At AP, Judy Lin reports on action in California:

The state Assembly on Thursday passed a set of bills intended to broaden the mental health and health care services covered by private insurance plans. 

Lawmakers approved AB154, which would require insurers to cover the diagnosis and treatment of mental illnesses, and AB171 for coverage of developmental disorders such as autism. They also approved legislation to cover oral chemotherapy treatments and mammograms regardless of age. 

The bills now move to the Senate ahead of a Tuesday deadline to pass legislation that was introduced last year.

From the Assembly bill analysis:

According to the author, this bill is intended to  confirm existing law and close perceived loopholes that health  plans and insurers exploit to deny essential treatment to individuals with PDD/A. The author maintains that, by explicitly listing medically necessary health care services that  must be covered for PDD/A, this bill confirms the coverage in the existing mental health parity law and basic health care  service requirements and will significantly reduce the need for  the DMHC and CDI to overturn continually erroneous coverage  denials by plans and insurers. The author points out that  requiring health plans and health insurers to cover screening,  diagnosis, and treatment of PDD/A and to develop and maintain  networks of qualified PDD/A service providers will force them to  bear their fair share of the responsibility for providing  essential and comprehensive treatment to the families in  California impacted by these conditions. The author adds that  this bill is intended to complete the end of insurance  discrimination against individuals with PDD/A that was started  in 2011 with the enactment of SB 946 (Steinberg), Chapter 650, Statutes of 2011, which dealt with behavioral health treatment  by addressing screening diagnosis and the remaining essential  medical treatments for PDD/A, such as speech, physical and occupational therapy, which are routinely denied despite clear  coverage requirements in existing law.

Doyle Calls on HHS to Include ABA

A press release from Rep. Mike Doyle:

U.S. Representative Mike Doyle (PA-14) announced today that he had contacted Health and Human Services (HHS) Secretary Kathleen Sebelius to urge her to require coverage of behavioral treatment for people with Autism Spectrum Disorders in all of the insurance plans that will participate in the health insurance exchanges that will open up across the country in 2014.

On December 16, 2011, the HHS Center for Consumer Information and Insurance Oversight issued an “Essential Health Benefits Bulletin” to provide guidance to State agencies working to set up the health insurance exchanges required under the health care reform legislation signed into law by President Obama in 2010. (the Patient Protection and Affordable Care Act, P.L. 111-148). These health insurance exchanges will open across the country in 2014 to act like supermarkets where individuals, families, and small businesses can shop around for an insurance policy that best meets their needs. This bulletin left the decisions about what health care benefits must be covered by insurance plans competing for customers in these exchanges up to the States that are setting them up.

“The evidence and scientific support for behavioral health services coverage for ASD is overwhelming,”Congressman Doyle observed in his letter to Secretary Sebelius. “That’s why I worked hard to ensure that behavioral treatment services like applied behavioral analysis would be covered by all of the insurance plans participating in the new health insurance exchanges.”

As a result of Congressman Doyle’s efforts, Section 1302 of the Patient Protection and Affordable Care Act, P.L. 111-148, required that the “Essential Health Benefits” required of all plans participating in the health insurance exchanges include “Mental health and substance use disorder services, including behavioral health treatment.”

The Essential Health Benefits Bulletin issued by HHS last month left States free to exclude behavioral health for individuals with autism spectrum disorders from the Essential Health Benefits they require insurance policies to cover.

Congressman Doyle’s letter to Secretary Sebelius urged HHS to revise its guidance on Essential Health Benefits to require insurance plans participating in any health insurance exchange to cover behavioral health treatment services like applied behavioral analysis for individuals with autism spectrum disorders.

“Insurance companies shouldn’t be able to deny any group of patients coverage for medical treatment that has been proven to be both safe and incredibly effective,”Congressman Doyle added. “That’s clearly what’s been happening with behavioral health treatments for people with autism. I will continue to push to ensure that behavioral health treatment services for individuals with autism are required as Essential Health Benefits as of 2014.”  

Click here to see the letter.

ASD and Hollywood

At The Boston Globe, Joseph P. Kahn writes that the movie "Extremely Loud and Incredibly Close" and the TV series "Touch" feature child characters who appear to have ASD.

Another TV series, NBC’s “Parenthood,’’ features an 11-year old boy with Asperger’s. His family’s struggles to help him adjust to daily life constitute a recurring theme on the two-year-old show. Characters with Asperger’s have also shown up in “The Big Bang Theory,’’ “Grey’s Anatomy,’’ and HBO’s feature “Temple Grandin.’’

Besides “Extremely Loud,’’ “Mozart and the Whale’’ (2005) and “Adam’’ (2009) are among recent movies with a story line involving Asperger’s. Novels such as Jodi Picoult’s “House Rules’’ have added to the overall picture as well, as have first-person accounts like David Finch’s new book “The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband.’’
...

Peter Bell is president of the advocacy group Autism Speaks and parent of an autistic teenager. The big change in public awareness has occurred over the past five years, according to Bell, when shows like “Parenthood’’ came along. “Most depictions have been pretty good,’’ said Bell. “And I think most families enjoy seeing autism depicted, as long as the focus is on the more positive aspects.’’

John Scott Holman, a blogger for Autism Speaks and Wrong Planet, likewise gives “Parenthood’’ high marks. He is exploring the topic of “pop autism,’’ as he puts it. Now that Holman, who lives in Kansas, has been diagnosed with Asperger’s, “it seems contagious,’’ he quipped. “It’s practically become trendy, a pop culture buzzword.’’

DSM-V, Blood Pressure, and Redistricting

At CNN, Dr. Charles Raison uses a couple of analogies to explain issues surrounding DSM-V:

All psychiatric diseases are like blood pressure. They are on a continuum without gaps. If one administered questions to identify any condition and rate its severity in a large enough group of people, one would find someone occupying every value from zero to the maximum score.

The problem in psychiatry is that our entire diagnostic system is based on the idea that mental illnesses are like cancer and not like blood pressure. The DSM provides minimum criteria for each disorder, which means that no matter how close you are to having any given condition, if you fall below the line you technically don’t have it.

I suspect you can see the problem immediately. If nature does not provide clear guidelines for where normal stops and mental illness begins, how does the line get drawn? The quick answer is that it gets drawn in much the same way the voter redistricting lines get drawn: based on some data, a lot of fighting, and finally some not entirely satisfactory compromise.

So back to autism. Like all other mental disorders, it runs along a spectrum from people who most of us would have called nerdy when I was a kid to people who spend their lives unable to speak, rocking back and forth for hours on end. We all agree that the silent, rocking folk are ill and need care. But where does extreme nerdiness and social awkwardness give way to Asperger’s syndrome? When is someone autistic enough to deserve the label?

DSM-V: Pros and Cons

At The Huffington Post, Allen Frances writes:

The pressure for services naturally stretches the boundary to include children with a heterogeneous array of problems that place them in vaguely defined territory, further and further away from classic autism. Any effort toward a more precise definition will narrow the spectrum and therefore seem to threaten the services that have been tied to the diagnosis.

So how can we accomplish both important goals -- i.e. achieve a more precise diagnosis of autism AND not deprive services for those who need them? I think the best solution is to decouple school services from the DSM diagnosis of autism. Instead of DSM diagnosis, the child's specific learning and behavioral problems should guide eligibility and individualized planning.

Children who now get inappropriately labeled autistic should lose the inaccurate diagnosis, but not lose the needed services.

But this proposal raises the question: if not DSM, what?  Absent a clear (if flawed) set of criteria, how do officials decide who gets services?

At CNN, Jennifer A. Pinto-Martin writes:

One positive outcome of revising the criteria could be an impetus for the development of more targeted services and therapies that can better serve the needs of children across the autism spectrum. ...

Insurance companies will be motivated to reimburse for therapy that can demonstrate improvement in functioning, and a more targeted approach has a better chance of achieving this goal.

From the perspective of medical research, the change in criteria is both good and bad. The search for the cause of autism has been hampered by the current one-size-fits all definition. Many researchers believe that the various subtypes of autism may well have differing causes. By narrowing the diagnostic criteria, researchers can sort those with the disorder with great clarity and consistency of symptoms.

On the other hand, monitoring changes in the prevalence of autism over time -- an important, ongoing research initiative -- will be hampered. Tracking prevalence is one of the major tools in epidemiologic investigations because it gives us useful clues about the causes and risk factors for health problems. By changing the way in which children are labeled, we will face a decrease in prevalence. Finding out the real change in risk from an artificial increase or decrease can be difficult.

Dawson on DSM-V

At The Washington Post, Janice D'Arcy interviews Geraldine Dawson of Autism Speaks.  Dr. Dawson expresses some caution about DSM-V:

We really don’t know yet how the new system will influence the ability to receive a diagnosis or services...The concern is that persons struggling with autism symptoms may not qualify for a diagnosis under the new system, especially those who are more cognitively capable. We won’t know how much of a concern this is until definitive studies are conducted...

Although it is possible that some service providers or funders could request a re-evaluation, especially if a child or adult is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, many social service, medical, and educational programs require an assessment and diagnosis of ASD to determine eligibility for ASD-specific services, such as early intensive behavioral interventions.

Almost all the autism insurance laws that have been enacted in 29 states define autism spectrum disorders according to the most current definition of autism in the DSM; thus, all categories of autism, as long as they meet the criteria of autism spectrum disorder, will continue to be covered.

CBS Story on DSM-V and "Outgrowing" the Diagnosis

CBS reports:

Two new studies on autism are out -- one suggesting kids can outgrow the disorder, and the other finding that changing the definition of autism could leave out thousands of patients.

The first study, released in the journal Pediatrics, suggests that some children who got an autism diagnosis were later found to no longer have it -- possibly because they originally had other issues, such as anxiety, depression or hearing disorders.

The other study is raising concerns among parents of children with an autism diagnosis. It was authored by Dr. Fred R. Volkmar, director of the Child Study Center at Yale University. He suggests in the study that proposed changes in the definition of autism would sharply reduce the rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services.

But Dr. Catherine Lord, one of the experts working on those new autism guidelines for the Diagnostic and Statistical Manual of Mental Disorders (DSM), said on "CBS This Morning" that the intention of changing the DSM -- the book considered the standard reference for mental disorders, driving research, treatment and insurance decisions -- is not to exclude those that already have been diagnosed, but to better define the condition.

Insurance Action in Virginia and California

On Friday, The Virginian-Pilot reported:

A bill to fix a flaw in an childhood autism insurance coverage law approved last year breezed through the House of Delegates today, attracting just one dissenting vote.

The measure authorizes the state Board of Medicine to develop regulations for the licensure of behavior analysts involved in the treatment of autistic children, a necessary step for the care of those youngsters to be covered by Virginia insurers.

After years of debate, lawmakers in 2011 passed a law requiring insurance companies to cover the diagnosis and treatment of young children with autism spectrum disorder. Its provisions generally apply to autistic children ages 2-6 and caps annual expenses at $35,000.

Also on Friday, Autism Votes reported:

The Assembly Appropriations Committee yesterday voted AB.171 out of committee 12-5 and to the Assembly floor for a full vote.

Introduced in 2011 by Assemblyman Jim Beall (D-San Jose), the bill would end any remaining discrimination for health insurance coverage for occupational therapy, physical therapy, speech and other medically necessary treatments for people with autism. A provision covering behavioral health treatments was deleted by the committee due to the enactment last year of SB.946.

More on DSM-V Impact

The New York Times follows up on its story about the impact of DSM-V:

“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”

But some autism advocates argue that acknowledging the neurological basis for socially odd behaviors has benefits beyond eligibility for services, promoting cultural tolerance and a degree of self-understanding that may be lost without it.

“Having a diagnosis helps people understand why we process thoughts and emotions differently and make positive changes,” said Michael John Carley, director of the Global and Regional Asperger Syndrome Partnership, which urged members to call the psychiatric association to complain. “Sadly, we may be heading back to the days when our differences are seen through the lens of character deficits rather than in the context of brain wiring.”

Even within the medical community, the number of people who would not be eligible for an autism diagnosis under the new criteria is a matter of dispute. Some may fall under a new category, “social and communication disorder,” though it is not clear what kind of aid, if any, they would be eligible for as a result.

Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the revisions, said ... the committee’s own data shows that very few who currently have a diagnosis would be dropped. And another analysis of the effect of the proposed new definition, published this month in The Journal of the American Academy of Child and Adolescent Psychiatry, found that roughly 40 percent of individuals with Asperger syndrome would not be given a diagnosis under the new definition. That study suggested that altering the criteria slightly could recapture most of those who would otherwise be excluded.

Yet some parents of severely autistic children who are nonverbal, and may need constant care to avoid injuring themselves and others, say they would welcome a narrowing of the spectrum.

“Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected,” said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on his blog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.

Insurance Mandate Legislation in Utah and Virginia

The Deseret News reports on Utah:

Legislation sponsored by Rep. Ronda Menlove, R-Garland, requiring health insurance providers to cover the treatment up to $50,000 a year will come before lawmakers in the new session that begins Monday.

It's the second go-round for those in search of coverage for autism disorders. In 2009 a similar bill failed as critics cited problems with a mandate-approach to insurance coverage that could financially hurt small businesses by increasing premiums

But the Utah Autism Coalition cites studies that show treatment may be the best chance that up to 47 percent of autistic children have to lead normal, productive lives. And it says public schools and mental health centers are limited with long wait lists.

The Richmond Times-Dispatch reports on Virginia:

Children with autism could have a key treatment covered by insurance by the end of this year under a measure heading to the House of Delegates.

The bill, sponsored by Del. Thomas A. "Tag" Greason, R-Loudoun, is intended to address technical issues with the autism insurance mandate legislation passed during last year's session that have delayed implementation.

Greason's bill gives the Board of Medicine the power to promulgate the regulations that legislators asked them to last year, and directs them to do it within 280 days. It also creates a work group of industry experts to help the board with the regulations.

The measure carries an emergency clause, which would speed it through the General Assembly to the governor's desk. Emergency legislation, which takes effect upon the governor's signature, requires the approval of 80 percent of lawmakers in each chamber.

The House's Health, Welfare and Institutions Committee approved the measure 21-0 Tuesday.

"The governor has said he's going to sign it as soon as he gets it on his desk," Greason said.

"Therapy Bag" Mom Has a Petition

WHAS-TV reports: 

Her son who has autism was stuffed in a duffel bag by a teacher. Thursday, that mom will head to the school board meeting armed with a petition. Sandra Baker says that petition has nearly 170,000 signatures on it. It calls on the board in Mercer County to discipline the teachers involved and to institute a training program for teachers dealing with special needs children.

 

Will DSM-V Affect Prevalence Data and Services?

At The New York Times, Benedict Carey reports:

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.
The definition is under review by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The D.S.M, as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions.

The study results, presented on Thursday at a meeting of the Icelandic Medical Association, are still preliminary, but they offer the latest and most dramatic estimate of how tightening the criteria for autism could affect the rate of diagnosis. Rates of autism and related disorders likeAsperger syndrome have taken off since the early 1980s, to prevalence rates as high as one in 100 children in some places. Many researchers suspect that these numbers are inflated because of vagueness in the current criteria.

"The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”Experts working on the new definition — a group that formerly included Dr. Volkmar — strongly questioned the new estimate. “I don’t know how they’re getting those numbers,” said Catherine Lord, a member of the task force working on the diagnosis.

Autism in North Dakota

The Grand Forks Herald reports on a legislative hearing:

In written testimony, Mindy Iverson of Bismarck told legislators about the struggle to get the right services for her son, Jack, 4.

“In North Dakota, we do not have many resources, and the ones we have take entirely too long,” she wrote.

Other states have centers for children with autism, and something similar needs to be looked at for Bismarck, she said.

Sen. Larry Robinson, D-Valley City, said he was concerned to hear about the variation in services across the state.

“Whether we have a child that is autistic in the west or the east or the north or the south, it would be our intention, I would hope, that they all receive the services available,” he said. “That really concerned me, the disparity that, in some areas, there’s little if any place to go.”

Wieland said he wants individuals who have autism to come before the committee to share their recommendations for what the state could do to improve services.

Anyone interested in providing autism-related recommendations to legislators may email lcouncil@nd.gov, subject line: Human Services Committee. 

Letters can be sent to: Legislative Council, ATTN: Human Services Committee, State Capitol, 600 E. Blvd., Bismarck, ND, 58505.

Special Education and African American Students

Nirvi Shah writes at Education Week:

A new initiative hopes to tackle one of special education's most persistent problems:the disproportionate identification of black children as having disabilities.

Now, the National Association for the Education of African American Children with Learning Disabilities will use grant money from the Oak Foundation to train parents how to better advocate for their children and address this persistent disproportionality.

How big is the problem? While African Americans make up approximately 17 percent of public school enrollment, they account for 31 percent of students identified as having mental retardation or intellectual disabilities, 28 percent of students labeled as having an emotional disturbance, and 21 percent of students who have learning disabilities. Some of these categories aren't pure medical diagnoses, calling judgment, and perhaps bias, into play.

Advocacy and special education go hand in hand. Parents who push for diagnoses and services do have a leg up over parents who rely on schools to do the heavy lifting. (I have been told by some special educators that while some white students are diagnosed with having autism based on their characteristics, sometimes, black children with identical behavior will wind up with a diagnosis of emotional or behavioral disturbance based on parents' persistence, or lack thereof.)

Insurance Legislation in Michigan and Virginia

Laura Weber reports at Michigan Radio:

A national advocacy group for autism-treatment says Michigan tops its list of states it believes could require insurance companies to cover treatments for autistic children this year.

Rick Remington, with the New York-based group Autism Speaks, said the support of Republican leaders in the Michigan legislature along with Governor Rick Snyder bodes well for autism-treatment legislation.

"It’s been before the legislature for a number of years, it’s gotten strong support from Governor Snyder, as well as the advocacy of the lieutenant governor,” Remington said. “We’ve got strong support, bi-partisan support from the Michigan legislature. So, we’re very confident we will see a bill become law this year.”

Last week, the Virginian-Pilot reported:

Virginia parents' wait for insurance coverage for their autistic children continues.
After years of debating the issue, the legislature last year required Virgnia insurance companies to cover diagnosis and treatment costs of young children with autism spectrum disorders, capping expenses at $35,000 annually.

That policy was supposed to take effect this month.

But it hit a snag after Gov. Bob McDonnell amended the bill so that behavioral analysts must be licensed by the state for their treatments to be covered by insurance, when Attorney General Ken Cuccinelli in May opined the state presently lacks that licensing ability.

Del. Thomas "Tag" Greason has filed a bill to fix that issue by giving the Board of Medicine licensing authority and directing the body to develop regulations for that purpose.

His proposal directs temporary regulations to be created within 280 days and features an emergency clause, meaning it would go into effect immediately if it can muster support from four-fifths of the members in both General Assembly chambers.

Some lawmakers suggested using national licensing standards as a fallback so coverage for children can be provided sooner. McDonnell's administration opposes that approach.

Action on the bill from Greason, R-Loudoun County, was delayed until next week after a House committee hearing Thursday morning.

Criminal Charges Against ASD Kids

The Pensacola News Journal reports:

When the news broke last week that a speech therapist filed felony battery charges against an autistic student, the incident sparked discussion about whether the legal system is the best way to handle special-needs children when they act out.
...

We don't often hear about incidents like these in the Pensacola area.

Assistant State Attorney Greg Marcille said his office rarely sees cases like this one, but it is not uncommon for juveniles and adults with mental disabilities to be charged with crimes.

"This exact circumstance would be unusual," he said.

But nationally, it's not rare for an autistic students to get arrested.

"It's not an isolated incident," said Lydia Brown, who works with the Autistic Self Advocacy Network in Washington, D.C. "It's not uncommon."

In Livonia, Mich. last May, 11-year-old autistic student Victor Sleta was arrested after he bolted from school. In Hamilton, Ala., in October, nonverbal autistic student Emily Holcomb, 14, was charged with first-degree felony assault after allegedly hitting and pushing her special education teacher.

While school district employees have the right to file charges against a student, advocates like Brown — who is autistic — say the legal system is not the proper way to punish students with autism.

She said students and teachers should be taught ways to cope when outbursts happen.

"When charges are pressed on autistic students in school, I believe it's almost always wrong," Brown said. "In the vast majority of these cases, an autistic student is provoked by somebody. As an autistic person, when people touch me unexpectedly, my reaction is to hit them."

More on Bell Appointment

Earlier posts described the appointment of Peter Bell to the President's Committee for People with Intellectual Disabilities, as well as some negative reaction.


Michelle Diament writes at Disability Scoop:

“We cannot ignore the rapid rise in the rate of autism that occurred during the 1990′s, in tandem with the increased use of thimerosal-containing vaccines in the U.S.,” Bell said in a statement at the time, which is still posted on Autism Speaks’ website. “We must continue to explore every possible avenue, including various environmental toxins, to get at the underlying issues that are affecting a generation of our children.”

Autism Speaks officials would not address the vaccine-related concerns directly but said they are very happy about Bell’s appointment.

“We are thrilled about Peter’s well-deserved nomination to this important advisory committee and share the White House’s commitment to improving the lives of all people with intellectual disabilities,” Autism Speaks president Mark Roithmayr said in a statement.

Bell also has support from some outside of Autism Speaks. Patricia Wright, national director of autism services at Easter Seals, said she’s worked with Bell recently to advocate for reauthorization of the Combating Autism Act and on initiatives focused on adults with autism. Given the significant number of individuals with both autism and intellectual disability, Wright said she thought Bell would bring a much-needed perspective to the committee.

White House officials said they will proceed with the appointment as planned and are waiting for some paperwork to be filed to make Bell’s new position official.
“The president stands behind this appointment and we look forward to Peter’s contributions to the committee,” Obama spokesman Shin Inouye told Disability Scoop.

Kim Wombles writes at Science 2.0:

Peter Bell is the father of a young man with autism, and as his son has reached adulthood, he has shifted his focus to adult services. I was privileged to hear Bell speak in person in July 2011 and meet him briefly. He is keenly concerned with making sure that housing and employment needs for adults with autism are met. His new organization, Advancing Futures for Adults with Autism, is working with Autism Speaks and several other organizations to help create better support systems for autistic adults.

...
Before individuals in the autism community sign petitions asking for Obama to reconsider his appointment, I urge them to examine AFAA and new changes being implemented at Autism Speaks. I encourage them to listen to Bell speak, rather than rely on second-hand, unsubstantiated claims regarding his beliefs and his work.

ASAN Criticizes Appointment

An earlier post mentioned the appointment of Peter Bell to a presidential committee.  ASAN is critical:

The Autistic Self Advocacy Network, the nation's leading advocacy group run by and for Autistic adults, today expressed concern and disappointment over President Obama’s announcement Tuesday of his intent to appoint anti-vaccine activist Peter H. Bell as a member of the President’s Committee for People with Intellectual Disabilities.

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, ASAN Director of Community Engagement and an autistic parent of autistic children herself.

Bell, Executive Vice President of Programs at Autism Speaks, has a long history of supporting anti-vaccination related causes, dating back to his time as President and CEO of Cure Autism Now, which merged with Autism Speaks in 2007. Despite wide ranging scientific evidence to the contrary, Bell and others in the anti-vaccine movement have long maintained the existence of a link, a position viewed as irresponsible by many public health advocates.

“The link between Autism and vaccines has long been discredited, and so an appointment placing an anti-vaccine leader in a position to influence a greater audience and re-open the issue is disappointing and ill-advised. We respect and appreciate the Obama Administration's commitment to autism issues, but hope they will vet their appointees more carefully going forward,” Latimer noted.

[more here]

Autism Units

Michelle Diament writes at Disability Scoop:

More psychiatric hospitals are working to meet the needs of a burgeoning population of kids with autism and other developmental disabilities, a new study finds, but despite significant growth, services remain limited.

Researchers found just nine hospital units across the country that focus specifically on the needs of those with autism and other developmental disorders. That’s more than twice the number that existed 10 years ago.

Nonetheless, the specialized programs are far from meeting the national need, accounting for just 137 beds at psychiatric hospitals. Most of the facilities are concentrated in the Northeast and none are located west of Denver, according to the study published in the Journal of Autism and Developmental Disorders late last month.

Driving

From a study in The Journal of Developmental Behavioral Pediatrics:

Although a significant proportion of teens with higher functioning autism spectrum disorders were driving or learning to drive, the fact that most driving teens' individualized education plans did not include driving goals suggests an area of opportunity for improvement in transition planning. Driving teens were more frequently in regular education settings with college aspirations, which could help schools identify potential drivers.

At PsychCentral, Janice Wood provides some background:

Researchers at the Children’s Hospital of Philadelphia’s Center for Child Injury Prevention Studies note that the rate of children diagnosed with high-functioning autism spectrum disorder has increased over the past decade, which means that more of these kids are approaching the age to drive legally.

“Little is known about how HFASDs affect a person’s ability to drive safely,” said lead author Patty Huang, M.D., a developmental pediatrician at The Children’s Hospital of Philadelphia (CHOP). “Car crashes are the number one cause of death for teenagers, so it is important that we understand how HFASDs impact driving and how to develop appropriate educational and evaluation tools.”

In a first step to better understand the issue, researchers surveyed almost 300 parents of teens with HFASDs and discovered a handful of predictive characteristics among teens who are likely to become drivers, including: Being at least 17 years old; enrolled full-time in high school; planning to attend college; holding a paid job outside the home; having a parent who has taught another teen to drive; and including driving-related goals in his or her individualized education plan (IEP).