Summarizing What We Know About Treatment

Volkmar et al. sum up the evidence in the Journal of the American Academy of Child & Adolescent Psychiatry

Structured educational and behavioral interventions have been shown to be effective for many children with ASD76 and are associated with better outcome.8 As summarized in the National Research Council report,76 the quality of the research literature in this area is variable, with most studies using group controls or single-subject experimental methods. In general, studies using more rigorous randomized group comparisons are sparse, reflecting difficulties in random assignment and control comparisons. Other problems include lack of attention to subject characterization, generalization of treatment effects, and fidelity of treatment implementation. Despite these problems, various comprehensive treatments approaches have been shown to have efficacy for groups of children, although none of the comprehensive treatment models has clearly emerged as superior.76
Behavioral interventions such as Applied Behavioral Analysis (ABA) are informed by basic and empirically supported learning principles.77 A widely disseminated comprehensive ABA program is Early Intensive Behavioral Intervention for young children, based on the work of Lovaas et al.78 Early Intensive Behavioral Intervention is intensive and highly individualized, with up to 40 hours per week of one-to-one direct teaching, initially using discrete trials to teach simple skills and progressing to more complex skills such as initiating verbal behavior. A meta-analysis found Early Intensive Behavioral Intervention effective for young children but stressed the need for more rigorous research to extend the findings.79 Behavioral techniques are particularly useful when maladaptive behaviors interfere with the provision of a comprehensive intervention program. In such situations, a functional analysis of the target behavior is performed, in which patterns of reinforcement are identified and then various behavioral techniques are used to promote a desired behavioral alternative. ABA techniques have been repeatedly shown to have efficacy for specific problem behaviors,80 and ABA has been found to be effective as applied to academic tasks,81[ut] adaptive living skills,82[ut] communication,83[ut] social skills,84[ut] and vocational skills.85[ct]Because most children with ASD tend to learn tasks in isolation, an explicit focus on generalization is important.86Communication

Communication is a major focus of intervention and typically will be addressed in the child's individualized educational plan in coordination with the speech-language pathologist. Children who do not yet use words can be helped through the use of alternative communication modalities, such as sign language, communication boards, visual supports, picture exchange, and other forms of augmentative communication. There is some evidence for the efficacy of the Picture Exchange Communication System, sign language, activity schedules, and voice output communication aids.87[rct],88, 89, 90 For individuals with fluent speech, the focus should be on pragmatic language skills training. Children and adolescents with fluent speech may, for example, be highly verbal but have severely impaired pragmatic language skills that can be addressed through explicit teaching. Many programs to enhance social reciprocity and pragmatic language skills are currently available (Table 2; see Reichow and Volkmar91 for an extensive review).92, 93, 94, 95, 96, 97, 98, 99, 100, 101, 102, 103
There is consensus that children with ASD need a structured educational approach with explicit teaching.76 Programs shown to be effective typically involve planned, intensive, individualized intervention with an experienced, interdisciplinary team of providers, and family involvement to ensure generalization of skills. The educational plan should reflect an accurate assessment of the child's strengths and vulnerabilities, with an explicit description of services to be provided, goals and objectives, and procedures for monitoring effectiveness. Although the curricula used vary across programs, they often share goals of enhancing verbal and nonverbal communication, academic skills, and social, motor, and behavioral capabilities. In some instances, particularly for younger children, a parent-education and home component may be important. Development of an appropriate individualized educational plan is central in providing effective service to the child and family. Efficacy has been shown for 2 of the structured educational models, the Early Start Denver Model 104[rct] and the Treatment and Education of Autism and related Communication handicapped Children program,105[ct] but significant challenges remain in disseminating knowledge about effective interventions to educators.

Insurance Developments in Kansas and Hawaii

Autism Speaks reports:

Autism Speaks endorsed legislation introduced in Kansas to expand autism insurance benefits provided since 2010 to state employees to cover more families.

The bill was introduced by Rep. John Rubin (R-Shawnee)  and would require coverage for the screening, diagnosis and treatment of autism, including applied behavior analysis (ABA), for certain private health plans affecting hundreds of Kansas families. The bill was introduced with 34 cosponsors.

"Autism Speaks joins the Kansas autism community in commending Representative Rubin for his leadership on behalf of our kids," said Mike Wasmer, Autism Speaks' associate director of state government affairs, and a Kansas resident. "The pilot program for state employees was an overwhelming success and families across Kansas have waited too long for the same benefits to become available to them as well."

Rubin's bill would require autism coverage by fully funded large group plans and "grandfathered" small group and individual plans. The measure has been referred to the House Insurance Committee.

Autism Speaks also reports:

A 2014 Hawai'i autism insurance reform bill was voted out of two Senate committees yesterday with amendments sought by Autism Speaks to strengthen its provisions.
Sponsored by Senators Josh Green, Suzanne Chun Oakland and Russell Ruderman, the bill

SB.2054 was voted out of the Senate's Health, and Commerce and Consumer Protection committees. It would require state-regulated health plans to cover up to $50,000 a year for the screening, diagnosis and evidence-based treatment, including Applied Behavior Analysis (ABA), of autism up to age 21.

Amendments sought by Autism Speaks to protect the state from potential cost-triggering requirements under the Affordable Care Act, allowing the use of supervised staff to provide ABA, and other changes were approved by the committees. A competing bill opposed by Autism Speaks, SB.2578, was held by the lawmakers, led by Sen. Rosalyn Baker [right], who chairs the Commerce and Consumer Protection Committee.

Mike Wasmer, Autism Speaks' associate director of state government affairs, commended Hawai'i's autism community for providing strong testimony to the committee that helped improve the bill.

In addition to ABA treatment, the bill would require coverage for autism-related psychiatric, psychological, pharmaceutical and therapeutic care, such as speech, occupational and physical therapy.

Justice Department Moves on Tracking Devices

A release from Senator Charles Schumer (D-NY):

U.S. Senator Charles E. Schumer today announced that the Department of Justice (DOJ) would immediately allow existing grant funds to be used to fund voluntary tracking devices through local law enforcement agencies for children who have Autism or other developmental disorders in which “bolting” from parents or caregivers is common; the voluntary program would only be for parents who choose to use the devices. Schumer has pushed for this program in light of the Avonte Oquendo tragedy. Oquendo, a 14-year-old boy with autism, bolted from a school in Queens in October and his remains were just found. The federal government already provides grant funding for similar devices to track seniors with Alzheimer’s, and Schumer today said that DOJ would allow for grant funds to include children with Autism Spectrum Disorder (ASD). Schumer stressed that the program would be totally voluntary for parents, would be run by police departments or other local law enforcement entities, and would also provide funding for training of individuals on how to use and maintain these devices. Parents, schools, and law enforcement would all have to choose to participate. Massachusetts already has a successful program to help locate children with Autism that wander from their safe place.

The commitment was made by Attorney General Eric Holder at a Congressional hearing this morning. It follows this week’s announcement that Schumer would introduce "Avonte's Law" that would create and fund an entirely new grant program within DOJ that would provide this type of funding. Schumer said that because Avonte's Law would increase funding and provide a more stable funding stream, he would still be pushing it despite the progress announced today.

“The sights and sounds of NYC and other busy places can be over-stimulating and distracting for children and teens with Autism, often leading to wandering as a way to escape. Voluntary tracking devices will help our teachers and parents in the event that the child runs away and, God forbid, goes missing,” said Schumer. “DOJ already funds these devices for individuals with Alzheimer’s and they have done the right thing in deciding to do the same for children with Autism Spectrum Disorder. I'd like to thank Eric Holder and his staff for their commitment to this issue, and for instituting this measure to protect the vulnerable."

An Infographic on Vaccinations

Source: OnlineMastersinPublicHealth.com

Paternal Age and Psychiatric Disorders

At JAMA Psychiatry, John J. McGrath and colleagues have an article titled  "A Comprehensive Assessment of Parental Age and Psychiatric Disorders."

Importance There has been recent interest in the findings that the offspring of older fathers have an increased risk of both de novo mutations and neuropsychiatric disorders. However, the offspring of younger parents are also at risk for some adverse mental health outcomes.

Objective To determine the association between maternal and paternal age and a comprehensive range of mental health disorders.

Design, Setting, and Participants A comprehensive, population-based record linkage study using the Danish Psychiatric Central Research Register from January 1, 1995, through December 31, 2011. A total of 2 894 688 persons born in Denmark from January 1, 1955, through December 31, 2006, were followed up during the study period.

Exposures Maternal and paternal age at the time of offspring’s birth.

Main Outcomes and Measures We examined a broad range of International Classification of Diseases–defined mental disorders, including substance use; schizophrenia and related disorders; mood disorders; neurotic, stress-related, and somatoform disorders; eating disorders; specific personality disorders; and a range of developmental and childhood disorders. The incidence rate ratios for each mental disorder outcome were estimated by log linear Poisson regression with adjustments for the calendar period, age, sex, and age of the other parent.

Results The cohort was observed for 42.7 million person-years, during which 218 441 members of the cohort had their first psychiatric contact for any psychiatric disorder. Based on the overall risk of psychiatric disorders, the offspring of younger and older parents were at increased risk compared with those of parents aged 25 to 29 years. When the offspring were examined for particular disorders, the nature of the relationship changed. For example, the offspring of older fathers were at an increased risk of schizophrenia and related disorders, mental retardation, and autism spectrum disorders. In contrast, the offspring of young mothers (and to a lesser extent young fathers) were at an increased risk for substance use disorders, hyperkinetic disorders, and mental retardation.

Conclusions and Relevance The offspring of younger mothers and older fathers are at risk for different mental health disorders. These differences can provide clues to the complex risk architecture underpinning the association between parental age and the mental health of offspring.

Systematic reviews and meta-analyses have provided strong evidence indicating that the offspring of older fathers have an increased risk for schizophrenia1 and autism.2 Malaspina and colleagues3proposed that age-related de novo mutations in the male germline may contribute to an increased risk for neurodevelopmental disorders. In recent years, a growing body of data from genetic studies4- 7 has lent weight to this hypothesis. Apart from schizophrenia and autism, evidence suggests that the offspring of older fathers have an increased risk for bipolar disorder.8 Age-related mutagenesis in the male germline may also contribute to an increased risk for schizophrenia and autism in grandchildren,9,10 suggesting that some mutations may be silent (ie, with lower penetrance) in the first-generation offspring but still contribute to disease risk in subsequent generations. [emphasis added]

Gabriella Miller Kids First Research Act in the Senate

A release from Eric Cantor:

Congressman Eric Cantor (VA-7) today announced bipartisan, bicameral support for the Gabriella Miller Kids First Research Act. In December, H.R. 2019, sponsored by Congressmen Gregg Harper (R-MS), Peter Welch (D-VT), and Tom Cole (R-OK) overwhelmingly passed the House of Representatives with a bipartisan vote of 295-103. Senators Tim Kaine (D-VA), Mark Warner (D-VA), and Orrin Hatch (R-UT) plan to lead support for the companion bill and champion it through the U.S. Senate:

Congressman Cantor said, “Gabriella Miller was an inspiring young girl from Virginia who was only 9 years old when diagnosed with an inoperable brain tumor the size of a walnut. Gabriella’s fight lives on with the bipartisan Gabriella Miller Kids First Research Act. Putting a priority on federal funding for pediatric medical research at the NIH will help overcome childhood cancer, autism and many other diseases impacting our children. Thanks to the hard work of Congressmen Gregg Harper, Peter Welch, and Tom Cole the House chose to put finding cures for our kids before financing political conventions. With the bipartisan support of Senators Kaine, Warner, and Hatch, I hope the Senate acts swiftly to do the same and sends Gabriella’s bill to the President’s desk to be signed into law so we can help more children.”

Senator Kaine said, “The Gabriella Miller Kids First Research Act is an important way to honor the memory of this remarkable young Virginian while recognizing the importance of pediatric disease research. I’m honored to support this effort and look forward to doing all I can to move it forward in the Senate.”

Senator Warner said, “I am pleased to add my support to this worthwhile effort to boost NIH research for pediatric diseases. By all accounts, Gabriella Miller was a profile in courage, and I can think of no better way to honor her legacy.”

Senator Hatch said, “There is no greater tragedy than the loss of a child, as Gabriella’s parents know all too well. Their story is heart-breaking and shows how much more we have to stop pediatric illness. Prioritizing research funding at the National Institutes of Health to combat life-threatening childhood diseases just makes sense. That’s why I’m so proud to back this legislation with my good friends from Virginia and thank my colleagues in the House for their hard work. Once we’ve introduced this legislation in the Senate, I pledge to do everything in my power to make sure this bill becomes law.”

The Gabriella Miller Kids First Research Act is supported by over 100 patient advocacy groups and has over 2,600 Citizen Cosponsors. Learn more HERE.

DSM-5 and Services

A previous post noted that DSM-5 might reduce the prevlance statistics.  But schools do not have to rely on the DSM.  Indeed, a student without a diagnosis can get services while some students with DSM autism might not qualify.

NPR reports:

A South Korean study, funded in part by Autism Speaks, found that previously diagnosed children who didn't fit the new autism criteria would instead be diagnosed with the newly created social communication disorder, which would likely qualify them for services.

But Roy Richard Grinker of George Washington University doesn't think that's going to happen to a lot of kids. The DSM-5 will be used primarily in research settings, where "diagnoses are based on rigorous application of criteria," he says. "In everyday life, diagnoses may be made for short or long-term benefits, like helping a child get into a classroom environment that will help him or her."

The people who actually assess kids with social interaction problems or repetitive behaviors usually aren't focused on the DSM-5 criteria, Grinker says. Instead they are asking, "What is the best set of services for this person?" and, "What diagnosis should I give the person to get him or her those services?"

So even if the government lowers its estimate of children with an autism spectrum disorder, Grinker says, there could still be an increase in number of kids across the country who receive an autism diagnosis from a local clinician.

The new study confirms that "the overwhelming majority" of children diagnosed with an autism spectrum disorder under the old criteria will also meet the new criteria, says pediatrician Susan Hyman of the University of Rochester.

Avonte's Law

Senator Charles Schumer (D-NY) called for federal action on tracking devices.  In light of the death of Avonte Oquendo, he is sponsoring eponymous legislation.

In New York, WABC-TV reports:

New York Senator Charles Schumer is announcing that he will introduce legislation called "Avonte's Law" to protect autistic children.

Schumer's proposed bill would create and fund a program to provide voluntary tracking devices and expand support services for families with children who have Autism Spectrum Disorder or other developmental disorders in which "bolting" from parents or caregivers is common.

The voluntary program would only be for parents who choose to use the devices.

Schumer wants to give the Justice Department the authority and funding to provide grants to local law enforcement entities and other organizations with an interest in assisting these children.
This program would be modeled off an innovative, voluntary federal program that is already in place to track seniors with Alzheimer's.

Autism Speaks Lobbies Southern States

Lorri Unumb blogs at Autism Speaks:

As Charlie Daniels would say, “The South’s Gonna Do It Again.” Notwithstanding that my own home state of South Carolina was an early leader in autism insurance reform, several Southern states are still lacking insurance coverage for autism treatments. As such, the Autism Speaks Advocacy Team has hit the road down south! We’re working in Tennessee, Georgia, North Carolina, and Mississippi as well as a handful of other states scattered around the country.

Judith Ursitti is spending time in Georgia, where Governor Nathan Deal recently put $2.4 million into his budget for state employee autism insurance coverage. Hooray! Shelly Hendrix was in Jackson,Mississippi this week to witness our autism bill unanimously pass through the House Insurance committee. Another hooray!

Earlier this week (and last week), I hit the legislative building in Tennessee to negotiate with a couple dozen lobbyists who oppose our autism insurance bill. I’ll be back in Nashville next week and the next week, and I’m looking forward to meeting lots of autism families there on Tuesday, February 4th, when our bill is being heard before the House Insurance and Banking Committee. I hope all the Tennessee autism families out there will come to the hearing that day and wear red! If you haven’t yet heard from Jennifer Sheridan, the autism mom and grassroots-organizer-extraordinaire in the photo below, I bet you will soon!

As for North Carolina, there was lots of activity in the fall, and I look forward to getting back to Raleigh soon! In the fall, I attended a wonderful luncheon for the ABC of NC autism program in Winston-Salem, at which Maya Angelou was the keynote speaker.

Wacko Stays in Race, for Now

It's No-Name-Calling Week, but what else can you do when a lunatic makes public statements?  The Chicago Daily Herald reports:

Republican leaders called Thursday for Susanne Atanus to drop out of the GOP primary for the 9th Congressional District after she told the Daily Herald this winter's bitter weather is a sign that God is angry over abortions and same-sex marriage.

During an interview with the Daily Herald editorial board this week, Atanus said she believes God is angry because of same-sex marriage, abortions, civil unions and gay rights, resulting in severe weather and autism, among other things.

Her comments went viral on Thursday, resulting in a backlash online and among state party leaders.

On Thursday, Atanus said she will not drop out of the primary against David Earl Williams III, and as of late in the afternoon she said she still had not heard from the GOP leaders.

"I'm not withdrawing from the race. I don't know why they are not standing behind me," Atanus said. "They should talk to me personally. I will not back out of the race."

Jack Dorgan, chairman of the Illinois Republican Party, said in a statement on Thursday, "The offensive statements by Susanne Atanus have no place in the modern political debate, and she has no place on the ballot as a Republican."

"Her candidacy is neither supported nor endorsed by the leaders of our party, and she should withdraw from the race immediately."

Adam Robinson, chairman of the Chicago Republican Party, distanced himself from Atanus in the same statement.

"Atanus is not in any way affiliated with any of our efforts in the Chicago GOP, nor have we ever supported, endorsed, or assisted her in any way at any time," Robinson wrote.

DSM-5 and Prevalence

Many posts have discussed the potential impact of the fifth edition of the Diagnostic and Statistical Manual (DSM-5).  From CDC:

 JAMA Psychiatry has published a new study: “Potential impact of DSM-5 criteria on autism spectrum disorder (ASD) prevalence estimates.” Researchers found that estimates of the number of children with ASD might be lower using the current Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria than using the previous Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) criteria.

You can read the article’s abstract here. Read more below for a summary of the findings from this study.

Main findings:

Over 80% of children who met the Autism and Developmental Disabilities Monitoring (ADDM) Network classification for ASD, which is based on DSM-IV-TR criteria, also had documented symptoms that met the DSM-5 criteria (which were published in May 2013).
The remaining 20% met the ADDM Network classification for ASD, but did not meet the DSM-5 criteria. However, many of those children were very close to meeting DSM-5 criteria and were missing only one of the necessary symptoms.

Children who met the ADDM Network classification for ASD were more likely to meet DSM-5 criteria if:

• They had a history of developmental regression
• They had intellectual disability or
• They had been diagnosed with ASD by a community provider or were receiving special education services under an autism exceptionality, or both

There were no differences between boys and girls or between White and Black children in their likelihood of meeting both the DSM-5 criteria and the ADDM Network classification for ASD.
The findings suggested that estimates of the number of children with ASD might be lower using the current DSM-5 criteria than using the previous DSM-IV-TR criteria.

As doctors and other clinicians start using the DSM-5 criteria, they might diagnose ASD using new or revised tools or they might document symptoms differently. These changes in everyday community practice could offset the DSM-5’s effect on estimates of the number of children with ASD.

Video Takedown of the Vaccine Theory

Michael Hiltzik reports at The Los Angeles Times:

The old line about a lie traveling halfway around the world before the truth can get its boots on certainly applies to the supposed link between autism and the MMR (measles/mumps/rubella) vaccine-- in spades.aut

Aaron Carroll, the pediatrician and medical policy expert who pointed us toward the map of vaccine-preventable disease outbreaks we reported on Monday, delivers the indispensable background on the autism-MMR link in this video. For its clarity and directness, it's a must-see.
     

Defense Department Autism Research Will Continue

Previous posts have noted a surprising source of autism funding:  the Defense Department. Autism Speaks reports:

House and Senate budget negotiators have agreed to continue funding the Department of Defense Autism Research Program (DoDARP) at $6 miilion in the next defense budget.

Congress has included funding for peer-reviewed autism research through the Congressionally Directed Medical Research Programs (CDMRP) since 2007. About $47 million has been set aside for autism research through the program since it started.

DoDARP’s mission is to promote innovative research that advances the understanding of autism spectrum disorder and leads to improved outcomes. Each of the CDMRP research areas involve community members to find and fund the best research to eradicate or treat medical conditions.

The defense bill goes to the President to be signed into law.

Evidence-Based Practices

A number of posts have discussed the evidence for autism interventions.

The National Professional Development Center on Autism Spectrum Disorders (NPDC) has updated the autism intervention literature review:

Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder

View 2014 EBP Report [ DOWNLOAD PDF ]

Evidence-based intervention practices (EBPs) for children with ASD are the basis on which effective programs are built. In 2010, the NPDC conducted a review of the literature (from 1997-2007) and identified 24 EBPs. The center has just completed an expanded and updated review, which yielded a total of 27 practices. The report of the 2014 review is now available in PDF format from the link above.

EVIDENCE-BASED PRACTICE (EBP) FACT SHEETS

EBP Fact Sheets contain the definition of the intervention, the type of outcomes it has generated, the age range of participants, and citations for the specific articles that provide the evidence for the efficacy of the practice.

EBP Fact Sheets are excerpts from Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder

• Antecedent-Based Intervention Fact Sheet [ PDF ]
• Cognitive Behavioral Intervention Fact Sheet [ PDF ]
• Differential Reinforcement Fact Sheet [ PDF ]
• Discrete Trial Teaching Fact Sheet [ PDF ]
• Exercise Fact Sheet [ PDF ]
• Extinction Fact Sheet [ PDF ]
• Functional Behavior Assessment Fact Sheet [ PDF ]
• Functional Communication Training Fact Sheet [ PDF ]
• Modeling Fact Sheet [ PDF ]
• Naturalistic Intervention Fact Sheet [ PDF ]
• Parent-Implemented Intervention Fact Sheet [ PDF ]
• Peer-Mediated Instruction and Intervention Fact Sheet [ PDF ]
• Picture Exchange Communication System Fact Sheet [ PDF ]
• Pivotal Response Training Fact Sheet [ PDF ]
• Reinforcement Fact Sheet [ PDF ]
• Response Interruption / Redirection Fact Sheet [ PDF ]
• Scripting Fact Sheet [ PDF ]
• Self-Management Fact Sheet [ PDF ]
• Social Narratives Fact Sheet [ PDF ]
• Social Skills Training Fact Sheet [ PDF ]
• Structured Play Groups Fact Sheet [ PDF ]
• Task Analysis Fact Sheet [ PDF ]
• Technology-Aided Instruction and Intervention Fact Sheet [ PDF ]
• Time Delay Fact Sheet [ PDF ]
• Video Modeling Fact Sheet [ PDF ]
• Visual Supports Fact Sheet [ PDF ]

Tactics of the Anti-Vaccine Movement

Amy Wallace writes at The New York Times:

IN 2009, I wrote a cover story for Wired magazine about the anti-vaccine movement and profiled Paul Offit, a leading proponent of vaccines for children. Dr. Offit is a man. I am a woman. That was sufficient grounds for things to get ugly.

In online comments and over email, I was called a prostitute and the C-word. J. B. Handley, a critic of childhood vaccination and the founder of the autism group Generation Rescue, affiliated with the actress Jenny McCarthy, sent me an essay titled, “Paul Offit Rapes (intellectually) Amy Wallace and Wired Magazine.” In it, he implied that my subject had slipped me a date-rape drug. Later, an anti-vaccine website Photoshopped my head onto the body of a woman in a strapless dress who sat next to Dr. Offit at a festive dinner table. The main course? A human baby.

I thought of this early this month, when I saw another Photoshop hack job. An advocacy group called Food Democracy Now was displeased by an article in The New York Times about public hearings regarding a proposed ban on genetically modified organisms on Hawaii Island; the article pointed out that many of the anti-G.M.O. arguments ignored science. In response, FDN cut off the head of the article’s author, Amy Harmon, and pasted it atop an image of a woman in a leopard-skin bathing suit.
...
So a few journalists get heckled, you may be thinking. Why should we care? Here’s why: This kind of vitriol is not designed to hold reporters accountable for the fairness and accuracy of their work. Instead, it seeks to intimidate and, ultimately, to silence female journalists who write about controversial topics. As often as not, even if they’ve won two Pulitzers, as Ms. Harmon has, these women find their bodies — not their intellects — under attack.

George H.W. Bush and Disability Rights

Today is the 25th anniversary of the inauguration of George H.W. Bush.

In 1990, he signed PL 101-476, which changed the title of the Education for All Handicapped Children Act to Individuals with Disabilities Education Act (IDEA). The new law added two categories of eligibility to federal special education law -- autism and traumatic brain injury -- and mandated transition services.

In the same year, Bush also signed the Americans with Disabilities Act (ADA), the nation's first comprehensive civil rights law addressing the needs of people with disabilities, prohibiting discrimination in employment, public services, public accommodations, and telecommunications.

The Bush administration's role in ADA was not passive.  As Joseph P. Shaprio explained in his book, No Pity: People with Disabilities Forging a New Civil Rights Movement, EEOC Chairman Evan Kemp and White House counsel C. Boyden Gray played key roles in passing ADA.

Maine Legislation and the Affordable Care Act

The Maine insurance mandate only applies to children five and under.  In the state, Medicaid does cover ABA for severe cases but not for HFA.  A legislative proposal would fill the gap, as AP reports.

The measure, introduced by Democratic Sen. Colleen Lachowicz of Waterville, could also be a potential cost saver for the Medicaid program as some of those costs would be shifted onto private insurance, said Cathy Dionne, director of programs and administration of the Autism Society of Maine, who said she billed $860,000 to Medicaid for her son's treatment from ages 4 to 16.

In 2012, the state paid claims for more than 5,830 [sic: actually, 5,381] residents with autism spectrum disorders, which can cause social and behavioral challenges, according to a recent report by the Department of Health and Human Services. That's up 60 percent over five years, the report said.

But any bill that carries a cost will face an uphill battle this session as lawmakers grapple with a $119 million shortfall in the $6.3 billion, two-year budget and other financial issues.

The measure would result in higher monthly insurance premiums of nearly $1.50 per person, according to a report by the state's Bureau of Insurance. [Apparently the bureau took the report down.]

It would also cost the state about $742,000 a year, as the Affordable Care Act requires states to subsidize the cost of benefits mandated beyond those required under the law, the report said. Some autism treatment services will be covered under the new federal health care law, which requires insurers to treat mental health no differently than they do physical illnesses. But some companies still won't cover applied behavior analysis, according to the bureau. [emphasis added]

Read more here: http://www.kentucky.com/2014/01/19/3042049/maine-examines-expanding-autism.html#storylink=cpy

Crime, Autism, and Sandy Hook

The Hartford Courant reports that the Sandy Hook commission heard from Yale autism experts Fred Volkmar and Matthew Lerner.

Adam Lanza "displayed a profound autism spectrum disorder with rigidity, isolation and a lack of comprehension of ordinary social interaction and communications," a Yale psychiatrist involved in Lanza's care concluded, according to state police records.

The recently released police reports revealed that Adam Lanza was seen at the Yale Child Study Center in his early teens and was once prescribed the antidepressant Celexa.

Volkmar, a child psychiatrist, professor of pediatrics, and chairman of the Yale Child Study Center, and Lerner, a psychology professor and researcher, said that people with autism and Asperger's syndrome are more likely to be victims than perpetrators. When people on the autism spectrum do commit violence, it's almost always impulsive and reflexive, and in response to a situation that has overwhelmed them.

That Lanza apparently had an autism spectrum diagnosis and committed a calculated crime makes his case exceedingly rare. Lanza killed his mother before driving, heavily armed, to the Sandy Hook school.

Someone with an autism spectrum disorder might struggle to control his emotions in a confusing situation, might exhibit poor judgment socially and might inappropriately assign blame. He might become overwhelmed and agitated when stressed, but in most instances wouldn't act out violently, Lerner said.

...

Volkmar said that the virtual world could be isolating, but advised caution in assessing someone's online activity.

For a person on the autism spectrum, "one of the pulls toward the computer is that it is rule-governed,'' said Volkmar, adding that a person "can relate to others [in ways] that are not as complicated as doing it in real time.''

Lerner said that with the emergence of social networks, researchers are finding that many online relationships mirror the vibrancy of real-life friendships.

So when analyzing someone's behavior online, it's critical to look at quality and content, not just time, Lerner and Volkmar said.

Insurance in Georgia and Kansas

AP reports:

Gov. Nathan Deal has proposed the state employee health plan cover treatment of autism, a move applauded by advocates who say early intervention can improve behavior and quality of life.

In his budget this week, Deal would set aside $2.4 million for the coverage. Dozens of other states have passed legislation compelling insurers to provide for the treatments, which can be costly but effective. Research has shown early intervention treatments can prevent or greatly minimize some of the associated disabilities of autism.

Georgia is one of only 16 states that don't require the coverage, according to state Rep. Ben Harbin, R-Evans, who is the lead sponsor of "Ava's Law" that would compel insurers in the state to pay for the treatments. The bill is named after Anna Bullard's daughter, who was diagnosed with autism at the age of 2 and who was denied coverage under the state employee health plan in 2006.
...

Details of specific treatments that might be covered, for how long and for what age must still be worked out by the Department of Community Health, which oversees the state employee health plan. Nearly 635,000 members and dependents were enrolled in the state plan as of December.

And lawmakers must still sign off on the governor's proposal and could make changes under the current budget process. Lawmakers are required to pass a balanced budget before the end of the session.

A decision on how to pay for the coverage change has yet to be made. State officials said it was possible it could be a combination of department funds and a minimal per-member, per-month premium increase.

Bullard and Harbin both said they were grateful to the governor and hoped his proposal would prompt lawmakers to take action on "Ava's Law."

In Kansas City, KSHB reports:

Families in Johnson County are going into debt trying to take care of their children with autism. Now, they’re pushing state lawmakers to act.

Kansas is one of 14 states that doesn’t require insurance companies to pay for autism treatment. It’s treatment that could help someone like 10-year-old Claire Judah of Gardner, Kan., who may never be able to take care of herself.

"You wake up in the morning knowing that your child in going to need your care 24 hours a day," Claire’s mother Beatrice Judah said.
...
According to Mike Wasmer with Autism Speaks, the leading organizing for autism advocacy, therapy can cost families $40,000 to $60,000 per year. Unlike Missouri, the state of Kansas doesn’t require insurance companies to cover the costs of autism treatment for all families.

Hawaii Mandate Bill

A Wednesday release from Autism Speaks:

Autism Speaks today endorsed SB.2054, the 2014 Hawaii autism insurance reform bill which, if enacted, would make Hawaii the 35th state to require many health plans to cover applied behavior analysis (ABA) and other therapies for autism.

Introduced by Senators Josh Green, who chairs the Senate Health Committee, Suzanne Chun Oakland and Russell Ruderman, the bill is similar to a measure that passed both houses of the Legislature last year, but then failed to clear conference committee. SB.2054 would require state-regulated health plans to cover up to $50,000 a year for the screening, diagnosis and evidence-based treatment of autism up to age 21.

...
In addition to ABA treatment, the bill would require coverage for autism-related psychiatric, psychological, pharmaceutical and therapeutic care, such as speech, occupational and physical therapy.

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Minnesota, Oregon and the District of Columbia enacted reform laws last year; bills this year will be considered in Georgia, North Carolina, Tennessee and other states.

Factions

At WBUR in Boston, Susan Senator writes about factionalism:

Be careful what you wish for. This familiar adage struck me when I received an invitation from the Autistic Self Advocacy Network to join a protest on Wednesday against another autism advocacy group, Autism Speaks.

This may sound like the old Monty Python’s “Life of Brian” bit where two obviously like-minded religious groups — the People’s Judean Front and the People’s Front of Judea — were fighting to the death against each other. Or like the Menshiviks versus the Bolsheviks. You’re all crazy, a curse on all your heads, my great-grandmother would have said. But in the autism community, the rift among advocates is serious.  And far from being funny, it is causing me a lot of pain.

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So I have friends on both sides, fighting each other. They think I should take a side, take a stand. I can’t. They’re both right. Why does this happen to causes? Why can’t people see when they are all in something together? Why aren’t we trying harder to listen and connect? I sometimes feel it’s like the biblical story of Solomon. That the activism community is like the two mothers who claimed the same baby, and won’t know who is right until someone like Solomon suggests splitting it in half?

Obamacare and Habilitative Services

ACA requries individual and small-group plans to cover habilitative services. Kaiser Health News notes a catch:

But advocates fear that insurers may avoid providing benefits to the extent needed by people, many of them children born with serious developmental problems that require life-long care. That’s because instead of clearly defining habilitative services and spelling out what must be covered in individual and small group plans under the law, the Department of Health and Human Services permitted states and insurers to decide.

Under the health law, each state had to identify a "benchmark plan" that would serve as a basis for defining the essential health benefits offered there. In the final essential health benefits rule, HHS said that if a state’s benchmark plan doesn’t define habilitative benefits, states can choose to do so themselves. If they don’t set specific rules, they can either require insurance plans to cover those benefits at “parity” with rehabilitation services so that they’re similar in scope, amount and duration, or leave it to the insurers to determine how to cover the benefit and report that to HHS. Regulators will review the rules in 2016.

“We were pretty disappointed” with the language in the final rule, says Kim Musheno, director of public policy at the Association of University Centers on Disabilities, a membership organization of academic programs that advocates for disability issues.

Based on an initial tally, fewer than half of states have explicitly defined the services that are covered under habilitative services or required parity with rehabilitative services, says Katie Keith, director of research at the Trimpa Group, which consults with the advocacy group Autism Speaks on health law issues.

Strong advocacy by groups representing patients with autism has resulted in coverage by private insurers of at least some habilitative services. Thirty-four states now mandate coverage of intensive therapy called applied behavioral analysis for children with autism, says Lorri Unumb, vice president for state government affairs at Autism Speaks.

In addition, Medicaid provides comprehensive coverage for habilitative services for children who are enrolled in the program and others who meet state-specific standards based on their degree of disability or eligibility category. Under the health law, states that expand Medicaid to adults with incomes up to 138 percent of the federal poverty level (currently $15,856 for an individual) must cover the essential health benefits for those new enrollees, ensuring that they’ll have access to habilitative services, says Joe Touschner, a senior health policy analyst at Georgetown University Health Policy Institute’s Center For Children And Families.

Diagnosis Bottleneck

Many posts have discussed problems with screening, diagnosis, and early intervention. Sarah DeWeerdt writes at SFARI:

One of the frustrations that parents of children with autism most commonly voice is the long wait for a diagnosis.

Delays can occur at every step of the process. A child’s pediatrician may not be trained in identifying signs of autism, for example. A worrisome screening test may get lost in the shuffle without triggering a referral for follow-up. Even once a referral is made, a child suspected of having autism often spends months on a waiting list for evaluation at a specialized autism clinic.

“There is on average a two-year gap between when the problem was first noted and when the [children] are diagnosed,” says Matthew Maenner, an epidemiologist at the Centers for Disease Control and Prevention (CDC)’s National Center on Birth Defects and Child Disabilities in Atlanta. In fact, CDC data show that only 20 percent of children who have symptoms consistent with autism receive a formal diagnosis by 3 years of age1.

There are then likely to be more long waits for practitioners who have expertise in caring for people with the disorder, adding up to years of delays.

In the meantime, the children grow up and out of the critical period for early intervention.
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What’s more, the gulf between supply and demand may be growing. The American Academy of Pediatrics recommends that every child be screened for autism at 18 and 24 months of age. Yet only about half of pediatric practices routinely conduct such screenings2, 3.

This means that as more practices fall in line toward universal screening, waiting times for a diagnosis are likely to grow longer.

1: Maenner M.J. et al. J. Am. Acad. Child Adolesc. Psychiatry 52, 401-413 (2013) PubMed
2: Carbone P.S. et al. J. Autism Dev. Disord. 43, 964-972 (2013) PubMed
3: Zuckerman K.E. et al. Pediatrics 132, 445-453 (2013) PubMed

Social Networks and Prevalence

NIH reports on planned research by Peter Bearman:

THE SPREAD OF AUTISM DIAGNOSIS THROUGH SPATIALLY EMBEDDED SOCIAL NETWORKS Awardee Organization: COLUMBIA UNIV NEW YORK MORNINGSIDE
Abstract Text:
Project summary/Abstract This project will study the impact of diffusion of knowledge on the increasing prevalence of autism by building a large-scale, empirically calibrated simulation model of the social and interaction networks of parents. Despite hundreds of studies, existing explanations cannot account for the bulk of the increase in autism prevalence over the past three decades. Rising awareness and knowledge about autism has not been the focus of many empirical studies even though it has been widely acknowledged as a potential salient factor in the rise of autism. We have previously demonstrated that the diffusion of knowledge about autism through spatially proximate social relations has played an important role in autism's increase. Amplified by network interactions, the diffusion of knowledge about autism may be the key driver of the temporal and spatial patterns of rising autism incidence. It may also help explain the socio-economic disparity found in the probability and timing of receiving an autism diagnosis. A systems science approach is well positioned to model such a non-linear, endogenous diffusion process in tandem with other social, institutional and environmental causes. This project will use simulation methods to model the diffusion of autism diagnoses in California. We will reconstruct the state's entire population of 3 to 9 year old children from 1992 through 2010 (~3 million per year, ~57 million children) based on block level data from the three Federal censuses and all California birth records from 1989 to 2007. We will then empirically calibrate the parents' social networks by utilizing location data on focal points (e.g., schools, malls, childcare centers, and other points where parents interact). "What-if" scenarios, including distal environmental disasters and the initial distribution of incidence, will be incorporated in the model, as will all conventional risk factors known to operate at the individual level, community level factors known to be salient, and larger institutional processes that shape diagnostic regimes over time. The simulated results will be subjected to stringent validations using the spatial and temporal data of observed autism incidence from 1992 to 2010. Our project will demonstrate that social network analysis, agent-based modeling and increasingly available geospatial and organizational data can be effectively combined to inform the epidemiology of non- contagious diseases. Specifically, we anticipate that the modeling approach developed in this project will provide answers to the most important question confronting those interested in explaining the striking increase of autism prevalence over the past three decades: what accounts for the temporal and spatial patterns we observe? 

Cuomo Signs ABA Bill

A release from New York Governor Andrew Cuomo:

Governor Andrew M. Cuomo today signed into law a bill to establish a new state license for providers of applied behavior analysis (ABA) services to individuals with autism spectrum disorder. The new law will help individuals and families find quality ABA providers that have met stringent academic and training requirements, while also ensuring State regulation and continuing oversight of these providers, who work closely with a vulnerable population.

“This bill ensures one of New York’s most vulnerable populations is better protected,” Governor Cuomo said. “I commend Assembly Majority Leader Morelle and Senator Fuschillo for their work on this issue, and am pleased to sign it into law.”

Applied behavioral analysis is an intensive, often one-on-one treatment method that is beneficial for individuals with autism. This law establishes a new state license for behavior analysts (with at least a master’s degree) and a new state certification for behavior analyst assistants (with at least a 4-year college degree), with a protected scope of practice.

Senate Co-Leader Dean Skelos said, “Today, we are building upon the landmark insurance reform legislation passed in 2011 to reduce the out-of-pocket expenses paid by the families of those with autism. This new law will help reduce costs for many more families so they can get back to focusing on their loved ones. By greatly expanding the places where individuals with autism can access the care they need, New York has taken an important step in ensuring the 2011 law we approved is applied as it was intended."

Assembly Majority Leader Joseph Morelle said, “Two years ago, I worked with Governor Cuomo and autism advocates to ensure that insurance companies cover vital treatments for those living with autism,” said Majority Leader Morelle. “By creating this new professional licensure, we have taken a major step in ensuring that the thousands of children in New York who have been diagnosed with autism can receive the therapies they deserve. I applaud the Governor, my colleagues in the legislature and the countless advocates in New York for coming together to adopt this important legislation.”

"Governor Cuomo's signature on this legislation ensures that New York families can access meaningful, quality care for their loved ones with autism," said Judith Ursitti, Autism Speaks' director of state government affairs. "We remain continually grateful to him as well as to Assemblyman Joseph Morelle and Senator Chuck Fuschillo for their thoughtfulness, collaboration and leadership without which we would not be celebrating today. Under Governor Cuomo's leadership, New York continues to be a national leader in meeting the needs of the autism community."

Complementary and Alternative Medicine

There is a new study in the Journal of Behavioral and Developmental Pediatrics:  Akins, Krakowiak, Angkustsiri,  Hertz-Picciotto, and Hansen, "Utilization Patterns of Conventional and Complementary/Alternative Treatments in Children with Autism Spectrum Disorders and Developmental Disabilities in a Population-Based Study.  The abstract:

Objective: To compare the utilization of conventional treatments and utilization of complementary and alternative medicine in preschoolers with autism spectrum disorders (ASD) and other developmental disabilities (DD).

Methods: Participants were 578 children who were part of an ongoing population-based, case-control study of 2- to 5-year olds with ASD, DD, and the general population. Parents completed an interview on past and current services.

Results: Four hundred fifty-three children with ASD and 125 DD children were included. ASD families received more hours of conventional services compared with DD families (17.8 vs 11;p < .001). The use of psychotropic medications was low in both groups (approximately 3%). Overall, complementary and alternative medicine (CAM) use was not significantly different in ASD (39%) versus DD (30%). Hispanic families in both groups used CAM less often than non-Hispanic families. Variables such as level of function, immunization status, and the presence of an identified neurogenetic disorder were not predictive of CAM use. A higher level of parental education was associated with an increased CAM use in ASD and DD. Families who used >20 hours per week of conventional services were more likely to use CAM, including potentially unsafe or disproven CAM. [emphasis added] Underimmunized children were marginally more likely to use CAM but not more likely to have received potentially unsafe or disproven CAM.

 Conclusion: Use of CAM is common in families of young children with neurodevelopmental disorders, and it is predicted by higher parental education and non-Hispanic ethnicity but not developmental characteristics. Further research should address how health care providers can support families in making decisions about CAM use.

At The Huffington Post, Catherine Pearson writes:

"CAM use is quite prevalent, especially in children with" autism spectrum disorders, said Dr. Kathleen Angkustsiri, an assistant professor of developmental and behavioral pediatrics at the University of California, Davis, MIND Institute and an author of the study. She emphasized that parents used CAM in addition to traditional, evidence-based treatments -- not as a replacement.

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But researchers also found that 9 percent of the children had been treated with some form of potentially harmful CAM.

Some had used chelation therapy, used to remove heavy metals from the body. It has been shown ineffective in treating autism -- and unsafe. Others had used treatments the researchers considered invasive, such as vitamin B12 injections. Only one child had used secretin, a drug that has been shown to be ineffective treating autism. The authors said that shows the scientific community has successfully communicated the results of clinical trials to the general public.

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Overall, Paul Wang, senior vice president for medical research at the nonprofit advocacy group Autism Speaks, said he was not surprised by the high use of CAM among children with autism, citing a larger study, published in the journal Pediatrics last year, which found that roughly 30 percent of children had used some form of CAM -- with higher usage among children with gastrointestinal issues.

Work Helps with Symptoms

Employment is not only good for economic well-being and independence, but it may also help with the symptoms of ASD.  A release from Vanderbilt University:

More independent work environments may lead to reductions in autism symptoms and improve daily living in adults with the disorder, according to a Vanderbilt study released in the Journal of Autism and Developmental Disorders.

The study examined 153 adults with autism and found that greater vocational independence and engagement led to improvements in core features of autism, other problem behaviors and ability to take care of oneself.

“We found that if you put the person with autism in a more independent vocational placement, this led to measurable improvements in their behaviors and daily living skills overall,” said lead author Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and Vanderbilt Kennedy Center investigator. “One core value in the disability community and at the Vanderbilt Kennedy Center is placing people with disabilities in the most inclusive environments possible. In addition, this study gives us evidence that increasing the level of independence in an employment or vocational setting can lead to improvements in autism symptoms and other associated behaviors.”

Participants averaged 30 years of age and were part of a larger longitudinal study on adolescents and adults with autism. Data were collected at two time points separated by 5.5 years.

Taylor, in collaboration with colleagues at the University of Wisconsin-Madison, looked at such autism symptoms as restricted interests, repetitive behaviors, communication impairments and difficulties with social interactions and found the degree of independence in vocational activities was uniquely related to subsequent changes in autism symptoms, other problem behaviors and activities of daily living.

The results provide preliminary evidence that employment may be therapeutic in the development of adults with autism. Similar to typically developing adults, vocational activities may serve as a mechanism for providing cognitive and social stimulations and enhance well-being and quality of life.

“The majority of research on autism has focused on early childhood, but autism is a lifelong disorder with impairments that limit quality of life throughout adulthood,” Taylor said. “Given the prevalence of autism, now one in 88 children, we must continue to examine the factors that promote well-being and quality of life for adults with autism and other disabilities as a whole.”
Underemployment is a common phenomenon among adults with autism, the authors noted, with around 50 percent of adults with autism primarily spending their days with little community contact and in segregated work or activity settings.

Taylor says this research highlights the importance of employment programs for adults with autism and stresses the need for more intervention programming for this population.

This research was supported by grants from Autism Speaks, the National Institute on Aging(Grant No. R01 AG08768) and the National Institute of Mental Health (Grant No. K01 MH92598), with core support provided by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (Grant Nos. P30 HD15052; P30 HD03352) and theNational Center for Research Resources (Grant No. 1 UL1 RR024975).

Zero Tolerance, School Discipline, and Students with Disabilities

A new report from the US Department of Education takes aim at school discipline, particularly "zero tolerance" policies -- which sometimes fall particularly hard on ASD students.

Nationwide, data collected by our Office for Civil Rights show that youths of color and youths with disabilities are disproportionately impacted by suspensions and expulsions. For example, data show that African-American students without disabilities are more than three times as likely as their white peers without disabilities to be expelled or suspended. Although students who receive special education services represent 12 percent of students in the country, they make up 19 percent of students suspended in school, 20 percent of students receiving out-of-school suspension once, 25 percent of students receiving multiple out-of-school suspensions, 19 percent of students expelled, 23 percent of students referred to law enforcement, and 23 percent of students receiving a school-related arrest.2 [emphasis added]
 2  Statistics are drawn from unpublished (as of January 8, 2014) data collected by the Civil Rights Data Collection (CRDC) for the 2011-12 school year. Additional information and publicly available data from the CRDC can be found at http://ocrdata.ed.gov.  

Report on Restraint and Seclusion

The  Carsey Institute at the University of New Hampshire has a new report titled "Variation Found in Rates of Restraint and Seclusion Among Students With a Disability."  The abstract:

The restraint and seclusion of individuals—practices usually associated with highly restrictive environments—are extreme responses to student behavior used in some public schools. In this brief, authors Douglas Gagnon, Marybeth Mattingly, and Vincent Connelly report that restraint and seclusion are used much more frequently on students with a disability than on students without a disability. In addition, the majority of U.S. school districts does not restrain or seclude students with a disability; 59.3 percent of districts report no instances of restraint, while 82.5 percent do not report a single instance of seclusion. However, a small proportion of districts report exceedingly high rates. The authors also find that low-poverty, low-diversity school districts use restraint and seclusion on students with a disability more than twice as often as high-poverty, high-diversity districts. The authors conclude that, overall, the relationships between restraint and seclusion rates, and disability type and school characteristics, warrant further research. This brief draws on data from the 2009–2010 Civil Rights Data Collection and the 2009 Small Area Income and Poverty Estimates.

Correlation and Causation

Many posts have discussed possible causes of autism.  At io9, Robert T. Gonzalez writes:

Here for spreading far and wide is a graphical reminder of the important distinction between correlation and causation.

Redditor Jasonp55 writes that he was practicing Graph Pad when he produced the chart above and discovered the "real" cause of autism: organic food.

His tongue is obviously planted firmly in his cheek here, but the chart is nonetheless a simple and compelling example of how susceptible we can be to logical fallacies, cognitive biases, and extracting what we believe to be meaningful information from insignificant or coincidental data. As Cory Doctorow notes over at Boing Boing, "this a potentially useful chart for discussing this issue with friends who won't vaccinate themselves and their kids."

 

Jenny McCarthy Update

Celebrity Jenny McCarthy has long touted the idea that vaccines cause autism -- and in spite of the evidence, she has had some impact. Us reports:

Jenny McCarthy is setting the record straight. The View co-host has slammed reports that her son Evan, 11, doesn't have autism. On Friday, a rumor surfaced that the 41-year-old revealed that her only child is not autistic, even though she's publicly talked about his condition over the years.

"Stories circulating online, claiming that I said my son Evan may not have autism after all, are blatantly inaccurate and completely ridiculous," McCarthy tweeted on Jan. 3. "Evan was diagnosed with autism by the Autism Evaluation Clinic at the UCLA Neuropsychiatric Hospital and was confirmed by the State of California (through their Regional Center). The implication that I have changed my position, that my child was not initially diagnosed with autism (and instead may suffer from Landau-Kleffner Syndrome), is both irresponsible and inaccurate."