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Monday, August 31, 2015

Vaccination Rates

In chapter 2 of The Politics of Autism, I discuss the belief that vaccines cause autism.

Soumya Karlamangla reports at The Los Angeles Times:
The eruption at Disneyland occurred 14 years after health officials had declared the potentially deadly disease eliminated from the United States, thanks in part to childhood vaccination programs. The outbreak raised alarm that more scares could be on the way.
California lawmakers quickly moved to tamp down a growing resistance to vaccination that had been fostered in some communities by unfounded safety concerns. By summer, Gov. Jerry Brown had signed one of the nation's toughest laws to keep parents from opting not to inoculate their kids.
Nationwide data released Thursday by the U.S. Centers for Disease Control and Prevention show that although California children are immunized at a high level, the state's vaccination rate still lags behind the rest of the country.
Eric Holmberg reports at The Wilkes-Barre Times Leader:
Children going back to school in Pennsylvania could be walking into classrooms where as many as one out of every five classmates don’t have all the vaccines required by the state.
While many parents believe that disease outbreaks in school are rare because of vaccines, there were a record number of measles cases in the United States in 2014, according to the U.S. Centers for Disease Control and Prevention (CDC). The 668 cases in 27 states was the highest number since measles were considered eliminated in 2000.
And in the 2013-2014 school year, Pennsylvania had one of the worst vaccination rates in the country for the measles, mumps and rubella (MMR) vaccine, according to the CDC.
,,,
 Pennsylvania is one of 20 states that allows parents to claim a religious or philosophical exemption.
Those exemptions allow for a parent to not vaccinate “on the basis of a strong moral or ethical conviction similar to a religious belief.”
They can apply to people whose religion conflicts with vaccinations and others who believe a widely discredited study that said vaccines can cause autism spectrum disorder.
In tight-knit religious communities, there’s the potential for an outbreak. The largest measles outbreak last year (383 cases) occurred primarily among the Amish northeast of Columbus, Ohio. Pennsylvania is the other state with a large Amish population.

Sunday, August 30, 2015

Oliver Sacks, RIP

In chapter 2 of The Politics of Autism, I describe how the issue entered the national agenda.

The Washington Post reports:
Oliver Sacks, the world-renowned neurologist and author who chronicled maladies and ennobled the afflicted in books that were regarded as masterpieces of medical literature, died Aug. 30 at his home in Manhattan. He was 82.
In 1993, Dr. Sacks contributed greatly to autism awareness with his New Yorker profile of Temple Grandin, titled "An Anthropologist on Mars."  This passage is as relevant today as it was 22 years ago:
The history of autism, indeed, has been in part a desperate search for, and promotion of, “breakthroughs” of various sorts. One father of an autistic boy expressed this to me with some bitterness: “They come up with a new ‘miracle’ every four years—first it was elimination diets, then magnesium and vitamin B6, then forced holding, then operant conditioning and behavior modification—now all the excitement is about auditory desensitization and F.C.” Facilitated communication, which has been widely publicized, is based on the notion that if the hand or arm of a nonverbal autistic child is supported by a “facilitator,” the child may then be able to communicate by typing, or using an electronic communicator or a letter board. This technique was originally used, with considerable success, in children with cerebral palsy, in whom motor difficulties may make it impossible to speak. But autism is not simply a motor problem, like cerebral palsy; it is infinitely more complex. And yet the most extravagant claims have been made for the powers of F.C. in autistic people, too (that previously nonlinguistic children, for instance, have written entire autobiographies), and its proponents range from enthusiastic to evangelical. But rigorous testing suggests that, while F.C. can be useful for children with cerebral palsy or juvenile parkinsonism, its use with autistic children is much more dubious, and that in many cases the facilitator unconsciously guides the child’s hand.

Friday, August 28, 2015

Michigan Says No to Medical Marijuana for Autism

In The Politics of Autism, I discuss alternative treatments.

Bill Laitner reports at The Detroit Free Press:
Gov. Rick Snyder’s top state regulator on Thursday rejected a state panel’s advice to allow medical marijuana as a treatment for autism.
The decision followed three years of efforts by parents of autistic children, their lawyers and supporters to have Michigan become the first state to specify that marijuana could be used to treat autism.
Mike Zimmer, appointed in December as director of the Michigan Department of Licensing and Regulatory Affairs — LARA — said he was concerned that an approval would apply not just to serious cases of autism but to all cases. And he said that parents applying to use medical pot would need the approval of two medical doctors, yet there was no requirement that either doctor be experienced in treating autism.
In a four-page “Final Determination,” Zimmer said that allowing the use of medical marijuana for autism might do more harm than good to mildly afflicted autistic children. That view followed corroborating testimony in Lansing by Dr. Harry Chugani, chief of pediatric neurology at Children’s Hospital of Michigan and a national authority on autism.
In July, Chugani told the Free Press that “the vast majority of kids with autism do not need pot, and I won’t sign for it.” He said the drug should be reserved for those with “very bad behaviors, aggression, meltdowns.” Chugani could not be reached after the release of Zimmer’s order.
Orac writes:
Three weeks ago, I wrote a post likening the use of “medical marijuana” for autism to a form of quackery that I have written about many times over the years, namely so-called “autism biomed.” As I mentioned, a certain segment of the “autism biomed” movement has enthusiastically embraced medical cannabis, to be added to the other dubious treatments used to “treat” autism, such as chelation therapy, various supplements, hyperbaric oxygen, homeopathy, Miracle Mineral Solution (MMS, a.k.a. a form of bleach), and the like. (I’m talking to you, “Thinking Moms.”) As I detailed in that post, the parallels are unmistakable. In the case of cannabis for autism, there is the same evangelical embrace of cannabis as the next big thing that can help autistic children and the same dismissal of the extreme lack of evidence supporting the use of medical cannabis for autism and the lack of knowledge of the effect of long term cannabis use in very young children on their neurological development. Remember, we’re talking about children as young as three years old here and the use of cannabis over potentially many years.

Thursday, August 27, 2015

Autism Speaks and Research

Chapter 3 of The Politics of Autism discusses controversies over scientific and medical research.

At The Los Angeles Times, Steven Silberman writes:
Founded in 2005 at the height of parental anxiety about vaccines, the organization has lavished most of its funding on research uncovering prenatal risk factors for autism. It has not truly committed to serving the needs of autistic people and their families.
In 2011, the organization launched an effort with the Beijing Genomics Institute to map the whole genomes of 10,000 individuals from families with two or more autistic children, at a cost of $50 million. Meanwhile, only a tiny fraction of the money raised on walks organized by Autism Speaks goes to ensuring that autistic people who have already been born will be able to live happy, healthy, secure and productive lives.
Liz Feld, president of Autism Speaks, responds:
In 2014, Autism Speaks, along with other disability groups, led the successful effort to pass the Achieving a Better Life Experience Act (ABLE), which will allow the 58 million families affected by a disability, not just autism, to set up tax-preferred savings accounts – much like 529 college-savings accounts.
...
While the challenges and abilities of those living with autism vary, we know that each year there are 50,000 young adults who, at 22, age out of school-based services. Parents call this “the autism cliff.” There are few job opportunities, transition supports or independent housing options for those who want and need them. So we are working to change that. Over the past two years, Autism Speaks has held 28 town halls across the country focused on housing and employment. We are also helping employers tap into the talents and abilities of adults on the spectrum with TheSpectrumCareers.com (one of the lead developers is a young man with autism), to match job seekers to employers who have open positions.

Rights of Parents with Disabilities

In The Politics of Autism, I discuss the right of people with autism and other disabilities.  At Disability Scoop, Shaun Heasley writes:
Technical assistance issued jointly this month from the U.S. Department of Justice and the Department of Health and Human Services clarifies that children should not be taken from their moms or dads simply because a parent has a disability. Similarly, federal officials said that people with disabilities should not face added barriers to becoming foster or adoptive parents due solely to their special needs.
The move comes in response to an increasing number of discrimination complaints that the federal agencies say they’ve received from people with disabilities.
“This guidance will help ensure that parents and prospective parents are not discriminatorily deprived of custody of their children, or denied the opportunity to adopt or serve as foster parents, because of stereotypes and unfounded assumptions about persons with disabilities, which we have seen in our complaints,” said Jocelyn Samuels, director of the Office for Civil Rights at the Department of Health and Human Services.
The 18-page document sent to child welfare agencies and courts across the nation offers specifics about how such entities should go about their duty to safeguard children while also meeting their obligations under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act.

Wednesday, August 26, 2015

Autism ID Cards and the Dilemma of Difference

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.[i] Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”[ii]

[i] Mary Ann Spoto, “Autism Training For Law Enforcement In NJ Often Leads to Better Outcomes, Expert Says,” Newark Star-Ledger, March 18, 2014. Online: http://www.nj.com/union/index.ssf/2014/03/post_26.html.[ii] Greg Hambrick, “Recent Special `Autism’ Code on Virginia Driver’s Licenses and ID Cards Goes into Law: Helpful or Discriminatory for Individuals on the Autistic Spectrum?” Ashburn Patch, July 14, 2014. Online: http://patch.com/virginia/ashburn/recent-special-autism-code-on-virginia-drivers-licenses-and-id-cards-goes-into-law-helpful-or-discriminatory-for-individuals-on-the-autistic-spectrum.
According to its website the national average is 1 in 68. One Garden State lawmaker said he wants the New Jersey Department of Health to issue an identification card to a person with autism or an intellectual or other developmental disability.
“My bill (A-4662) says that people that have autism or intellectual or other developmental disabilities would be furnished with an identification card so that if first responders had to respond to a situation they may be able to get more information and maybe make a bad situation a little bit better,” said Assemblyman Sean Kean (R-Wall).
Under the bill, the DOH would post on its website an application form for the card, directions to fill it out and any other information deemed necessary. Printed copies of the form and information would also have to be made available upon request.
“This is not a mandate. This would provide people who want to have this with the ability to have this. It is optional so then you have the opportunity to get this and at no point would we want to put somebody’s privacy into play,” Kean said.
To obtain the card, the application would have to include a statement signed by a doctor certifying that the applicant has autism or an intellectual or other developmental disability. The bill provides for a $10 fee to offset the cost of the cards, but that could be waived by the DOH.
The cards would be designed to fit in a standard wallet.

Tuesday, August 25, 2015

Autism Dads

 In The Politics of AutismI discuss the role of families.

Daniel J. Laxman and colleagues have an article at Maternal and Child Health Journal titled "Father Involvement and Maternal Depressive Symptoms in Families of Children with Disabilities or Delays."
This study examined the longitudinal association between fathers’ early involvement in routine caregiving, literacy, play, and responsive caregiving activities at 9 months and maternal depressive symptoms at 4 years. Data for 3,550 children and their biological parents were drawn from the Early Childhood Longitudinal Study-Birth Cohort data set. Analyses in a structural equation modeling framework examined whether the association between father involvement and maternal depressive symptoms differed for families of children with autism spectrum disorder (ASD) and for families of children with other disabilities or delays from families of children who were typically developing. Results indicated that father literacy and responsive caregiving involvement were associated with lower levels of depressive symptoms for mothers of children with ASD. These findings indicate that greater father involvement may benefit families of children with ASD and highlight the need to support and encourage service providers to work with fathers.
From the article:
The findings of this study have important implications for policy makers and early intervention service providers. That greater father involvement was associated with better outcomes for maternal well-being underscores the need to develop focused programs to encourage fathers to be involved with their children with disabilities or delays, specifically children with ASD. Furthermore, service providers can be encouraged to engage fathers while providing early intervention services. Service providers can be supported in engaging fathers by being provided with training opportunities and other resources they need to work with fathers. Promoting father involvement is one way that practitioners and policy makers may promote maternal well-being and positive family outcomes through encouraging fathers to be more involved in effective ways.

Explaining the Recommendation on Screening

 In The Politics of AutismI discuss screening and diagnosis.  At US News, Dr. David Grossman, vice chair of the U.S. Preventive Services Task Force, explains its recommendations about screening:
[M]y colleagues and I, as part of the U.S. Preventive Services Task Force, looked at the best available research on the benefits and harms of screening for autism in young children. A screening test is used by pediatricians and other primary care clinicians to check for conditions in children who do not have recognized symptoms of an underlying disorder. In our review, we focused specifically on studies of children who didn't exhibit any apparent symptoms of autism or delay in development. The question is this: Should we attempt to screen all children for subtle indicators of autism or wait until these symptoms become apparent to parents and clinicians? Does earlier intervention make a difference for these children at this stage? And what are the harms, such as worry and labeling, for children who screen positive but are ultimately not diagnosed with autism?
What we found is this: We need more research to help us better understand the role of screening young children under three years for autism. For example, we need more research to determine the best ages to screen, the best screening tools to use, and whether screening all children ultimately helps their development and improves their quality of life. Our review found no studies that could tell us whether screening for autism in kids under three years of age without apparent symptoms leads to important benefits such as improvements in school achievement, cognitive and intellectual functioning, or the development of language and communication skills.

Our recommendation does not apply to kids who have already been diagnosed with autism or a developmental delay, or who are being evaluated or referred for developmental concerns by doctors or parents. Parents who do have concerns about their child's development should talk to their pediatrician or other health care provider. And in the face of unclear evidence, we encourage doctors to use their clinical judgment when deciding whom to screen and when to test young children without apparent symptoms for autism.

Monday, August 24, 2015

Depression

Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders.   For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.
Most men with autism have psychiatric disorders such as depression, finds a study of 50 men diagnosed with the disorder roughly 20 years ago. The findings highlight the range of challenges for adults with autism, many of whom lack the help they need.
Among the men who have another disorder, depression and attention deficit hyperactivity disorder (ADHD) in particular went unrecognized and untreated. The study was published 26 July in theJournal of Autism and Developmental Disorders1.

“The focus on autism alone has led to undertreatment of both depression and ADHD,” says lead researcher Christopher Gillberg, professor of child and adolescent psychiatry at the University of Gothenburg in Sweden. “Everyone who works with people with Asperger’s or autism needs to be aware that they should be looking out for these problems.”
The study is remarkable because it follows the same individuals over an extended period of time, says Matthew Siegel, assistant professor of psychiatry and pediatrics at Tufts University in Massachusetts. The findings also highlight the need for better diagnostic tools for adults with autism, Siegel says.
The study is a follow-up to an analysis of 100 Swedish boys and teens diagnosed with Asperger syndrome between 1985 and 1991. (The syndrome, characterized by high language ability, has since been folded into an autism diagnosis.)

Sunday, August 23, 2015

Down Syndrome, Autism, and Abortion

In the last chapter of The Politics of Autism, I discuss the vexing question:  what if a prental test for autism leads to abortions?  Tamar Lewin writes at The New York Times:
Opening a new front in the abortion wars, abortion opponents are pushing Ohio to make it illegal for a doctor to perform an abortion if a woman is terminating her pregnancy to avoid having a baby with Down syndrome.
The legislature is expected to approve the measure this fall because lawmakers endorsed by the National Right to Life Committee, which supports the bill, make up more than two-thirds of both houses.
Gov. John R. Kasich, a Republican who is running for president, opposes abortion but has not yet taken a position on this bill. Since his election in 2010, he has signed a variety of abortion restrictions, including a law requiring women to have an ultrasound and be offered a chance to see an image of the fetus before undergoing the procedure.
Mike Gonidakis, the president of Ohio Right to Life, said his group had made the bill here a legislative priority because Down syndrome is so recognizable, so easily diagnosed in pregnancy — and so likely to lead to abortion.
“We all want to be born perfect, but none of us are, and everyone has a right to live, perfect or not,” he said. “You go to any supermarket or mall and see these families who just happen to have a child with Down syndrome, and they will tell you how fortunate they are to have those children. Pretty soon, we’re going to find the gene for autism. Are we going to abort for that, too?”

Saturday, August 22, 2015

More Posey

Scott Powers writes at The Orlando Sentinel:
Rep. Bill Posey has quietly become a central figure in the movement linking vaccines to autism, even though he says he supports immunizations for young children.
Posey, R-Rockledge, whose district includes eastern Orange County, has tried for years to maintain a low profile on that issue while working behind the scenes with parents and others who believe there is a link between childhood vaccines and the disorder.
Now he is emerging more broadly and speaking out more publicly. In July he gave an impassioned speech on the floor of the House calling for investigation into vaccine-safety research. He also is a key figure in a book being published next week in which anti-vaccine activists raise allegations of federal-research fraud.
"I am absolutely, resolutely pro-vaccine," Posey said in an interview this week. "
...
Posey said he thinks parents should vaccinate their children but should spread out separate measles, mumps and rubella shots over time.
He said he recently told a friend, "'Tell your doctor, No. 1, you don't want any mercury in your vaccines. Number two, you want to spread out your MMR. She went and told her doctor, and he said, 'You're crazy; find another doctor!' Just like that."
Matt Carey, a nationally known advocate on autism issues, questioned Posey's self-description as "pro-vaccine" and his advice to mothers, because, he said, measles vaccines no longer are available outside the MMR shots.
"So what is a parent going to do? If you put fear into people like that, they will do neither, and they won't vaccinate," Carey said. "If you're pro-vaccine, and you're not really doing anything about it except carrying water for people who aren't pro-vaccine, it's a distinction without a difference."

Friday, August 21, 2015

Screening and Diagnosis: Age Cohort, Poverty, Race, and Family

In The Politics of AutismI discuss disparities in screening and diagnosis. At The Journal of Autism and Developmental Disorders,  Natacha D. Emerson, Holly E. R. Morrell1, Cameron Neece have an article titled "Predictors of Age of Diagnosis for Children with Autism Spectrum Disorder: The Role of a Consistent Source of Medical Care, Race, and Condition Severity."
Birth cohort was an important predictor of ASD diagnosis. Children born in or after 2006 (the year AAP guidelines were published) were diagnosed on average 35 months earlier than those born between 1994 and 2005. Compared to the 2014 CDC report, which reported an average age of diagnosis at 53 months for children born pre-AAP implementation, this suggests a noteworthy improvement in the diagnostic process (CDC 2014). However, while this may indicate that nationwide implementation of ASD screening guidelines improved screening and precipitated diagnosis, children in the later cohort were also significantly younger. Given that children born in or after 2006 were so young, they may represent the optimally diagnosed. As a result, interpretation of this effect should be made cautiously. Moreover, research on the success of AAP guideline implementation has produced mixed evidence. While most primary care practices increased their structured screening of ASD, referral of children who screened positive was inconsistent. In a study examining outcomes of the AAP screening guidelines, King et al. (2010) found that more than one-third of children who failed the screen were not referred to specialty care. Moreover, doctors that did refer patients to specialists found that many families failed to follow-up with recommended referrals (King et al. 2010). Consequently, conclusions drawn from the considerable effect size of the cohort predictor may not be solely attributable to AAP guideline implementation. Instead, we can speculate that increases in parental and physician awareness of ASD have also contributed to earlier identification and diagnosis seeking (Fountain et al. 2011; Hertz-Picciotto and Delwiche 2009). We can also postulate that age differences contributed to the magnitude of the measured effect.
Two other covariates significantly predicted age of ASD diagnosis. First, being a younger sibling was associated with earlier diagnosis. Parents’ familiarity with early warning signs of ASD likely explains this effect. Second, poverty level predicted diagnostic age, such that more impoverished children were diagnosed later than wealthier children. As suggested by the literature, families of lower SES are less likely to have a regular source of care and to receive routine medical supervision (DeVoe et al. 2007, 2008) even after controlling for health insurance (Fiscella et al. 2002). Moreover, families of lower SES may encounter additional economic and environmental barriers following referral to specialty care, given an increased likelihood of financial difficulties to afford medical copayments, time off work, and childcare for other family members (Kuhlthau et al. 2004). Consequently, the main effect of poverty level may reflect both pre- and postconsultation disparities. In contrast, while we expected that parental education would have an impact on diagnostic age, the current sample was better educated than that of the average United States citizen, which may explain the lack of anticipated findings.
In terms of interaction effects, the relationship between having a CSC [consistent source of care] and age of initial diagnosis depended on race. While having a CSC prompted earlier ASD diagnosis in Caucasian children, it delayed diagnosis for African American children. This racial disparity in children who have a CSC suggests two possibilities: race-based differences in practitioner and/or parent behavior.
  • DeVoe, J. E., Baez, A., Angier, H., Krois, L., Edlund, C., & Carney, P. A. (2007). Insurance ? access = health care: Typology of barriers to health care access for low-income families. The Annals of Family Medicine, 5(6), 511–518. 
  • DeVoe, J. E., Petering, R., & Krois, L. (2008). A usual source of care: Supplement or substitute for health insurance among low-income children? Medical Care, 46(10), 1041–1048. 
  • Fiscella, K., Franks, P., Doescher, M. P., & Saver, B. G. (2002). Disparities in health care by race, ethnicity, and language among the insured: Findings from a national sample. Medical Care, 40(1), 52–59 
  • Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65(6), 503–510.Hertz-Picciotto, I., & Delwiche, L. (2009). The rise in autism and the role of age at diagnosis. Epidemiology, 20, 84–90. 
  • King, T. M., Tandon, S. D., Macias, M. M., Healy, J. A., Duncan, P. M., Swigonski, N. L., et al. (2010). Implementing developmental screening and referrals: Lessons learned from a national project. Pediatrics, 125(2), 350–360. 
  • Kuhlthau, K., Nyman, R. M., Ferris, T. G., Beal, A. C., & Perrin, J. M. (2004). Correlates of use of specialty care. Pediatrics, 113(3), e249–e255.

Thursday, August 20, 2015

For Screening

In The Politics of AutismI discuss screening and diagnosis. At The Huffington Post, Dr. Lisa Shulman takes issue with  the U.S. Preventive Services Task Force, which says there is insufficient evidence to support universal autism screening.
The task force's review of the literature found evidence supporting the ability of screening instruments to pick up behavioral signs of autism in young toddlers. The review also found data supporting the benefit of early intervention in terms of improved outcome. However, it determined that there were insufficient data to support a recommendation for screening. This decision seemed to hinge on the lack of outcome data on young children who were "asymptomatic" and whose symptoms were picked up only by screening. But these children don't exist. Children who fail screening tests are symptomatic and demonstrating signs and symptoms of autism--but these signs are not being recognized or voiced until the screenings are carried out.
Waiting until the signs and symptoms are evident to parents and pediatricians takes us back to where we were a couple of decades ago. It will delay diagnosis, delay treatment and impact outcomes. These delays will also likely lead to more-significant disparities of care, since the literature has shown that minority populations are less likely to bring their concerns to their doctors and doctors may be less likely to pursue an autism diagnosis in such populations. Universal screening levels the identification playing field.
We live in an era in which 1 in 68 children is diagnosed with ASD. A timely diagnosis--during the critical window of the toddler years--is required in order to obtain the early intensive behavioral intervention that has been shown to result in the best outcomes. Discouraging universal, early screening is an indefensible course of action.
In the "balance of benefits and harms" that the task force's draft statement speaks of, a well-documented benefit should carry more weight and be given extra consideration over "harms" of inconvenience. That is where common sense comes in.

Tuesday, August 18, 2015

Parent Training

In The Politics of Autism, I discuss special education.

An August 7 release from the US Department of Education:
The U.S. Department of Education announced today nearly $14 million in five-year grants to operate 40 parent training and information centers to assist America’s families of children with disabilities.
The centers will provide parents with details and assistance on laws, policies and research-based education practices for children with disabilities. They will inform parents how data can be used to guide instruction; how to interpret results from evaluations and assessments; and ways to effectively engage in school reform activities.
"Parents are crucial to their child’s readiness to learn at every step of the education pipeline,” said U.S. Secretary of Education Arne Duncan. “These centers will work on behalf of parents to help their children with disabilities achieve their academic potential."
The parent center grants currently funded by the Department of Education promote effective education of infants, toddlers, children and youth with disabilities by strengthening the role and responsibility of parents and ensuring they have meaningful opportunities to participate in their children’s education.
The grants are being funded by the Office of Special Education and Rehabilitative Services and authorized by the Individuals with Disabilities Education Act (IDEA).

Monday, August 17, 2015

Shackled

In The Politics of AutismI discuss the use of restraint and seclusion in schools.

Christina Samuels reports at Education Week:
Restraint and seclusion in schools, particularly when used with students with disabilities, has been a simmering national issue for years.
But when video of a Kentucky school resource officer handcuffing an 8-year-old boy was released earlier this month by the American Civil Liberties Union, debate over the practice of restraining students erupted anew. The ACLU filed a lawsuit against the school resource officer, Kevin Sumner, and his employer, the Kenton County, Ky., sheriff's department.
The seven-minute video, which shows a whimpering and crying boy with attention deficit hyperactivity disorder cuffed at the biceps behind his back while Sumner stands nearby, is also stirring debate about disability, race (one of the children in the lawsuit is Hispanic, and one is African-American), and the role of school resource officers. And experts in school security say that the incident brings up another vexing issue: School resource officers are too often pulled into disciplinary issues that are better left to school staff.

 From a Connecticut report (See post for 2/8/15)
In Connecticut, children with Autism Spectrum Disorders (ASD) are the most likely children to be restrained or secluded in school. Experts have strongly cautioned against reliance on seclusion and restraint for children and adults with Autism. In 2011, the Interagency Autism Coordinating Committee (IACC), authorized under federal law as an advisory committee per the Combating Autism Act of 2006 (P.L. 109-416), issued a public letter to the U.S. Department of Health and Human Services outlining significant concerns regarding the pervasive use of restraint and seclusion for children with autism. The IACC—chaired by Thomas Insel, M.D., Director of the National Institute of Mental Health—stated:
[U]tilization of restraint or seclusion should be viewed as a treatment failure that exacerbates behavioral challenges and induces additional trauma.
In its letter, which specifically addressed seclusion and restraint in schools, the IACC endorsed numerous recommendations for federal agencies including regulatory reform, improved data collection, guidance and technical assistance for providers, concluding:
“[F]ederal legislation is urgently needed to ensure the safety of all students and staff” by requiring standards for monitoring and enforcement of restraint and seclusion practices, as well as prohibition of mechanical, chemical, and high-risk physical restraints . . . “the use of seclusion and restraint in every setting is a critical issue for people with ASD and other disabilities and their families that requires immediate Federal attention.” xiv

Sunday, August 16, 2015

Trump & Vaccines

In The Politics of AutismI discuss the electoral politics of the issue.

Cameron Joseph reports at The New York Daily News:
Donald Trump's White House bid is leaving some people feeling queasy - but it's his opposition to common vaccinations that could make people sick.
Trump has long trumpeted his false belief that the common vaccine to prevent measles, mumps and rubella has a direct link to rising rates of autism in the U.S.
And while most experts predict his presidential campaign will eventually collapse, they worry his spreading of the conspiracy could convince more parents not to vaccinate their kids, and lead to outbreaks of measles and other dangerous diseases that vaccines had all but wiped out in the U.S.
"As a political scientist I think it's extremely unlikely he'll win the nomination, but his prominence does run the risk of bringing his views on vaccines back in the spotlight," said Dartmouth University Professor Brendan Nyhan, who has done research on why the anti-vaccine movement's conspiracy theories have been so hard to dispel.
...
And with the topic back in the news, experts worry Trump, now with a huge national spotlight as the GOP front-runner, could do much more damage than he did with past remarks.

"He's got a bigger megaphone now and a bigger megaphone means a greater opportunity to spread disinformation," said Claremont McKenna College Professor Jack Pitney, an autism policy expert. "It's one thing to be an obnoxious jerk. It's another to say something that causes people to get sick.
Trump will claim that he is not "anti-vaccine," but that he favors spreading out vaccinations.  So why not follow his advice?  Because it's dangerous. On June 2, 2014, Tara Haelle wrote at Scientific American:
Following the CDC guidelines means children may get as many as five vaccines at one visit. But some parents space out vaccines, leading to delays in shots such as the first measles-mumps-rubella (MMR) dose, recommended when a child is between 12 and 15 months old.
The new study, published in the May 19 [2014] Pediatrics, found that administering the MMR shot or the less frequently used MMRV one (which includes the varicella, or chickenpox, vaccine) later, between 16 and 23 months, doubles the child’s risk of developing a fever-caused, or febrile, seizure as a reaction to the vaccine. The risk of a febrile seizure following the MMR is approximately one case in 3,000 doses for children aged 12 to 15 months but one case in 1,500 doses for children aged 16 to 23 months “This study adds to the evidence that the best way to prevent disease and minimize side effects from vaccines is to vaccinate on the recommended schedule,” says Simon Hambidge, lead author of the study and the director of general pediatrics at Denver Health. Otherwise, he says, an undervaccinated child is left at risk of infectious disease for a longer period. “Delaying also makes for increased visits to the doctor’s office,” he says, “along with the time and hassle and risk of exposure to other infectious diseases in the doctor’s office.” Hambidge’s previous research found that pediatric office visits might increase the risk of gastrointestinal illness (symptoms then potentially misinterpreted as a vaccine reaction).

Saturday, August 15, 2015

Possible Screening Tool

In The Politics of Autism, I discuss screening and diagnosis. Marissa Fessenden writes at SFARI:
A questionnaire that clinicians can administer in 20 minutes, either in person, by phone or online, correctly distinguishes children with autism from those without the disorder 86 percent of the time. Researchers described the tool 15 July in the Journal of Child Psychology and Psychiatry1.
The ‘gold-standard’ diagnostic tools for autism are the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). Both of these tools require extensive training to use and take hours to implement, making them impractical for use on a large scale or by clinicians who don’t specialize in autism.
In the new study, researchers tested an autism module of the Development and Well-Being Assessment (DAWBA) — a questionnaire developed to assess children for psychiatric disorders. The autism module, which is still being validated, probes a child’s attachment to certain adults, stress levels during social situations and need for rituals. Parents, teachers or the child himself can respond to the questions. A computer algorithm then analyzes the results and calculates the child’s likelihood of having autism.

...The DAWBA correctly flagged 88 percent of children who met the criteria for autism on the ADOS and the ADI-R. It also accurately identified children without the disorder 87 percent of the time. This means that it missed 12 percent of children with autism, and incorrectly pegged 13 percent of children as having autism — error rates on par with those of similar tools that require more intensive training to use, the researchers say.
The DAWBA could serve as a quick follow-up to autism screening tools, such as the Childhood Autism Spectrum Test (CAST) or the Social Communication Questionnaire. These tools are typically used in schools and pediatricians' offices to see if more specialized tests, such as the ADOS or ADI-R, are warranted.
From the abstract:
Increasing numbers of people are being referred for the assessment of autism spectrum disorder (ASD). The NICE (UK) and the American Academy of Pediatrics recommend gathering a developmental history using a tool that operationalises ICD/DSM criteria. However, the best-established diagnostic interview instruments are time consuming, costly and rarely used outside national specialist centres. What is needed is a brief, cost-effective measure validated in community settings. We tested the Development and Well-Being Assessment (DAWBA) for diagnosing ASD in a sample of children/adolescents representative of those presenting in community mental health settings.

...

The DAWBA is a brief structured interview that showed good sensitivity and specificity in this general population sample. It requires little training, is easy to administer (online or by interview) and diagnosis is aided by an algorithm. It holds promise as a tool for assisting with assessment in community settings and may help services implement the recommendations made by NICE and the American Academy of Pediatrics regarding diagnosis of young people on the autism spectrum.

Friday, August 14, 2015

Does Fiorina Understand California's Vaccination Law?

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism and the role of the issue in presidential campaigns.

Speaking at a town hall on Thursday in Alden, Iowa, Fiorina responded to a question from a mother of five who claimed that one of her children had an adverse reaction to a vaccination, saying “It’s always the parent’s choice.” She continued by referencing her daughter, who Fiorina said was bullied by a school nurse into vaccinating her pre-teen daughter for the Human papillomavirus, a sexually transmitted disease. “Measles is one thing…,” Fiorina said.
“When you have highly communicable diseases where you have a vaccine that’s proven, like measles or mumps, then I think a parent can make that choice, but then I think a school district is well within their rights to say, ‘I’m sorry, your child cannot then attend public school,'” Fiorina explained to reporters after the event.
“So a parent has to make that trade-off,” she continued. “I think when we’re talking about some of these more esoteric immunizations, then I think absolutely a parent should have a choice and a school district shouldn’t be able to say, ‘sorry, your kid can’t come to school’ for a disease that’s not communicable, that’s not contagious, and where there really isn’t any proof that they’re necessary at this point.”
Fiorina, who ran for Senate in California in 2010, said she disagreed with the state’s decision recently to eliminate a parent’s right to not vaccinate their children, even in cases of religious objection.
“California is wrong on most everything, honestly,” she said. “I’m not at all surprised that they made that mistake as well.”
It is not clear that Fiorina understands the California law.  First, the law does just what she suggests: keeps unvaccinated kids out of classrooms but allows for their home-schooling.   From the official legislative summary:
The bill would exempt pupils in a home-based private school and students enrolled in an independent study program and who do not receive classroom-based instruction, pursuant to specified law from the prohibition described above.
Second, here is the list of immunizations in the law.  Does she consider any of them to be esoteric?

(1)  Diphtheria.
(2)  Hepatitis B.
(3)  Haemophilus influenzae type b.
(4)  Measles.
(5)  Mumps.
(6)  Pertussis (whooping cough).
 (7)  Poliomyelitis.
(8)  Rubella.
(9)  Tetanus.
(10)  Varicella (chickenpox).
(11)  Any other disease deemed appropriate by the department, taking into consideration the recommendations of the Advisory Committee on Immunization Practices of the United States Department of Health and Human Services, the American Academy of Pediatrics, and the American Academy of Family Physicians.

Divergent Thinking

At The Huffington Post, Catherine Pearson writes:
Autism research tends to focus on the negative traits associated with the disorder, such as social and language difficulties, and what they portend for children.

But a preliminary new study released Friday highlights a potential upside, concluding that people with high levels of autistic traits may be more likely to produce truly original, creative ideas.
"It's important to recognize the strengths of people with autism spectrum disorders, as well as their difficulties," Dr. Martin Doherty, a senior lecturer in psychology with the University of East Anglia in the U.K. and an author on the new study told The Huffington Post. "Highly unusual creative problem solving appears to be another strength that parents, educators and employers should be aware of."
...
However, Dr. Steven Meyers, a professor of psychology at Roosevelt University and a Chicago-based clinical psychologist cautioned that it is unclear whether the participants' unusual interpretations lead to creativity that provides any real-world advantages, or if they simply reflect an idiosyncratic way of looking at objects and situations. Meyers, who did not work on the study, also emphasized the importance of remembering the majority of the participants had not received a formal autism diagnosis.
"It isn't clear exactly how well these results map on to real-world situations that people with autism spectrum disorders encounter in their lives," he said. "However, it sends an important message -- differences are not necessarily disabilities or disadvantages. Sometimes people need to view [them] with a wider lens to fully recognize and cultivate potential."
The article, titled  "The Relationship Between Subthreshold Autistic Traits, Ambiguous Figure Perception and Divergent Thinking," appears in the Journal of Autism and Developmental Disorders. The abstract:
This research investigates the paradox of creativity in autism. That is, whether people with subclinical autistic traits have cognitive styles conducive to creativity or whether they are disadvantaged by the implied cognitive and behavioural rigidity of the autism phenotype. The relationship between divergent thinking (a cognitive component of creativity), perception of ambiguous figures, and self-reported autistic traits was evaluated in 312 individuals in a non-clinical sample. High levels of autistic traits were significantly associated with lower fluency scores on the divergent thinking tasks. However autistic traits were associated with high numbers of unusual responses on the divergent thinking tasks. Generation of novel ideas is a prerequisite for creative problem solving and may be an adaptive advantage associated with autistic traits.

Thursday, August 13, 2015

How Bogus Theories Mislead and Stigmatize

In The Politics of Autism, I enumerate some of the purported causes of the condition.  At The Telegraph, Sarah Knapton writes:
A leading Oxford University academic has come under attack from colleagues for continuing to warn that the internet causes brain damage and autism in children, despite no evidence to support the claims.

In a blunt opinion piece published in the British Medical Journal, Professor Dorothy Bishop of Oxford, Dr Vaughan Bell of University College London and Dr Andrew Przybylski also of Oxford, accuse Baroness Susan Greenfield of misleading the public and confusing parents with her views.

For years the Labour peer has warned that technology, social media and video games are damaging developing brains. Her recent book Mind Change links short attention spans and social isolation and even autism to the rise of the internet.

But Professor Bishop, Dr Bell and Dr Przybylski say there is no evidence to back any of her claims and point out that research shows gaming is beneficial to young minds, while social networks help teenagers build friendship groups.

“Through appearances, interviews and a recent book, Susan Greenfield has promoted the idea that internet use and computer games can have harmful effects on the brain, emotions and behaviour,” they write in the BMJ.

“Despite repeated calls for her to publish these claims in the peer reviewed scientific literature, where clinical researchers can check how well they are supported by evidence this has not happened.
From the editorial:
Notably, Greenfield has speculated that online interaction might be a “trigger” for autism or “autistic-like traits.”1This claim has no basis in scientific evidence and is entirely implausible in light of what we know of autism as a neurodevelopmental condition that can be first diagnosed in the preschool years. Her claims are misleading to the public, unhelpful to parents, and potentially stigmatising to people with autism.
1. Greenfield S. Mind change: how digital technologies are leaving their mark on our brains. Rider, 2014.
The last line of this passage is noteworthy, as it acknowledges the problem of stigma.

Wednesday, August 12, 2015

Politics of Autism Press Release

FOR RELEASE AUGUST 2015

Contact Jacqline Barnes 301-459-3366 x5515
jbarnes@rowman.com

“Autism matters to everyone. Pitney leaves his reader understanding why this is true and why solutions have proven elusive. The Politics of Autism expertly maps the complex terrain of policy designed to address society’s challenges attributed to autism and provides a solid foundation from which to move forward.”
—Dana Lee Baker, School of Politics, Philosophy and Public Affairs, Washington State University

In the first book devoted exclusively to the contentious politics of autism, noted political scientist and public policy expert John J. Pitney, Jr., explains how autism has evolved into a heated political issue disputed by scientists, educators, social workers, and families. Nearly everything about autism is subject to debate and struggle, including its measurement and definition. Organizational attempts to deal with autism have resulted in not a single “autism policy,” but a vast array of policies at the federal, state, and local levels, which often leave people with autism and their families frustrated and confused.

Americans with autism are citizens, friends, coworkers, sons, daughters, fathers, and mothers. No longer simply the objects of public policy, they are active participants in current policy debates. Pitney’s fascinating look at how public policy is made and implemented offers networks of concerned parents, educators, and researchers a compass to navigate the current systems and hope for a path towards more regularized and effective policies for America’s autism community.

Features

  • The first book to focus exclusively and comprehensively on the politics of autism in the USA
  • Offers a vivid case study of how our political system deals with policy uncertainty
  • Useful to scholars, especially in college classes, but also accessible to general readers


John J. Pitney, Jr., is the Roy P. Crocker Professor of American Politics at Claremont McKenna College. He received his B.A. from Union College and his Ph.D. in political science at Yale. He is the author of The Art of Political Warfare and the coauthor of several books, including Epic Journey: The 2008 Elections and American Politics and After Hope and Change: The 2012 Elections and American Politics.

www.rowman.com

August 2015  180 pages  978-1-4422-4960-8  $38.00 Cloth
August 2015  180 pages  978-1-4422-4961-5  $37.99 eBook

"Autism Epidemic"

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."  At Care2, Cody Fenwick writes:
The numbers usually used to support the “epidemic” thesis are indeed shocking, at least at first. Autism Spectrum Disorder (ASD) had a prevalence of 1 in 5,000 in 1975, 1 in 150 in 2002, and 1 in 68 in 2012. That’s a powerful indication of a trend if there ever was one. But the truth behind these numbers is far murkier than it first appears.
First, it’s important to note that while diagnosis of autism has been going up, diagnosis of “intellectual disability” has declined. If we’re to take this data at face value, there’s as much an autism epidemic as there is a miracle cure for intellectual disability.
...
Additional research published earlier this year also casts doubt on the “autism epidemic” thesis. Extensive epidemiological analysis found that there was no change in American autism rates from 1990 to 2010, and that rates of autism were generally consistent across the globe.
...
One clever study in California looked at the geographical incidences of ASD diagnosis, and found that higher rates of the diagnosis were found in regions which had significantly higher levels of diagnostic resources. And if children were moved into a region with higher rates of the diagnosis, their chances of receiving a diagnosis increased.
...
Another reason to avoid using the term “autism epidemic” is that many people with autism identify with the condition, and object to likening it to a disease or plague. While most will acknowledge that people with autism face unique challenges in the life, it can be hurtful and demeaning to use the term “epidemic” when discussing a central part of their identity. This alone is reason enough to use more measured language
.
But jettisoning the term “autism epidemic” does not imply that we shouldn’t fight for better mental health services and research. It doesn’t even mean that there’s been no increase in the actual level of individuals with ASD, as the research is not decisive on that question. We just need to be honest about what the evidence does and doesn’t show, and we need to avoid making unwarranted claims to gain attention for our cause.

Tuesday, August 11, 2015

Young Adults with Autism

In The Politics of Autism, I write about the problems of young autistic adults.  Valerie Paradiz, the mother of a 25-year-old man with autism, writes at SFARI:
The need for these kinds of targeted programs and career services has grown enormously. Two decades ago, when Elijah received his diagnosis, just 4 in 10,000 children had an autism diagnosis. Today, according to the U.S. Centers for Disease Control and Prevention, the rate is roughly 1 in 68.
In April, the A.J. Drexel Autism Institute in Philadelphia published the first report documenting the effects of insufficient support for young people like Elijah. The report exposes a dramatic drop off in services, what it terms a “services cliff” that young adults experience as they transition from secondary education into the larger world.
The key findings of the 68-page report read like the story of Elijah’s life, validating what many families know is amiss. The findings also quantify the implications of systemically ineffective planning for the transition to adulthood and reveal the hardships young adults face as they make their first, fledgling attempts to negotiate life after school.
Like Elijah, roughly half of his peers are bullied in school. Only 58 percent had a transition plan in place by the federally mandated age of 16. (Even though I was working in the field, Elijah never had an adequate plan at any age from the public school.)
Approximately one in four young adults on the autism spectrum, my son included, receive no services that could help them become employed, continue their education or live independently. More than one-third are “disconnected during their early 20s,” the researchers found, meaning they never get a job or continue education after high school. Elijah experienced this same isolation in his early 20s.
The biggest deterrent to developing evidence-based programs for people with autism is the lack of available data. “Our situation is like driving a car through the fog with no dashboard,” says Paul Shattuck, director of the institute’s Life Course Outcomes Program.
Emphasis added:  the last point touches on a major theme of the book, the uncertainty surrounding nearly every aspect of the issue.

Monday, August 10, 2015

Thorsen and Conspiracy Theory

In The Politics of Autism, I discuss the conspiracy theories surrounding the issue.

At Forbes, Emily Willingham wites of Danish scientist Poul Thorsen:
Since news of his indictment on 22 counts of wire fraud and money laundering broke in April 2011, the conspiracy adherents have homed in on Thorsen as the mastermind of a fraud to convince people that vaccines are not causative in autism. Why Thorsen? Because he is the fourth author of seven on a paper showing no link between MMR and autism in a large population study of Danish children. The study and data, which are readily checked thanks to Denmark’s meticulous population registries, have not been called into question or retracted.
Even though Thorsen wasn’t the first or senior author on the study that conspiracy adherents cite, he was first author or senior author on many other studies related to neurodevelopmental conditions in Danish children, including autism and cerebral palsy. His work overall includes looking at links between autism and infection, autism and a family history of autoimmune disorders, cerebral palsy and in vitro fertilization, cerebral palsy and preterm labor, autism and a glutamate-related pathway, autism and socioeconomic factors, autism and jaundice, and a score of other studies related to preterm labor and inflammation.
...
In spite of the fact that Thorsen appears to be easily located, was an author on a scientific poster at a conference this year, and is living and working in Denmark, a number of high-profile vaccine-autism conspiracy adherents, including Robert F. Kennedy Jr., have repeated only in the last few months the claim that he is a fugitive, “on the run from Interpol,” and on Interpol’s most-wanted list. The Kennedy connection is an interesting one, given that Thorsen is author on a 2014 paper with other authors publishing “for the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network.”
If the charges are true, Thorsen bilked the US government, specifically the CDC, out of millions and used it to buy himself things. How that translates into a willingness to engage in a conspiracy with the CDC remains elusive.

Sunday, August 9, 2015

Posey

At Respectful Insolence, Orac takes on Rep. Bill Posey (R-Florida):
I’ll also dispense with Posey’s denial that he is antivaccine, stated thusly, “To begin with, I am absolutely, resolutely pro-vaccine. Advancements in immunization have saved countless lives and have greatly benefited public health.” This is almost as risible as Robert F. Kennedy, Jr. characterizing himself as “fiercely pro-vaccine.” It’s nonsense. Posey is a man who has been on the side of the antivaccine fringe for quite some time. Heck, he even appeared at the antivaccine quackfest Autism One in 2013 as part of a “Congressional panel”! He even introduced legislation that’s gone nowhere requiring the CDC to do a retrospective “vaccinated vs. unvaccinated” study. As I put it, Posey appears to be vying to take over the title of most antivaccine legislator in the U.S. Congress since Dan Burton retired. Not surprisingly, he has received not-insubstantial donations from prominent members of the antivaccine movement, several with names that, if you typed them into the search box of this blog, would bring up multiple posts packed with pristine Insolence. Whenever someone who is a associated with the antivaccine movement and has demonstrated antivaccine proclivities through his actions so piously denies being antivaccine, a good rule of thumb is that he is almost certainly antivaccine, and in this case Posey is just that.

Reaction to the Screening Recommendation

In The Politics of Autism, I discuss early screening. Rita Price reports at The Columbus Dispatch:
A draft recommendation from a federal task force says there’s not enough evidence to support universal checks — a position contrary to guidelines from other health associations and advocacy groups that urge early screening for all.

The difference in views comes amid a sharp rise in autism diagnoses. According to the most recent federal estimates, the disorder affects about 1 in 68 of the nation’s children.

Early screening and early identification lead to early intervention,” said Shawn Henry, executive director of the Ohio Center for Autism and Low Incidence. “And we know that works.”

Henry and others say the recommendation, released this week and open for public comment until 8 p.m. on Aug. 31, is likely to draw strong reaction. The panel responsible for it, the U.S. Preventive Services Task Force, is influential.

The American Academy of Pediatrics is sticking by its standards, which recommend screening for all children at ages 18 and 24 months. The academy’s president, Dr. Sandra Hassink, said early identification and referrals “are critical to ensuring that children with autism have access to effective therapies.”

Autism Speaks and the Autism Science Foundation, in a joint statement, called the draft proposal troubling and said it could be misinterpreted.

Though the task force does not explicitly discourage screening for autism, its proposal “has failed to fully endorse screening,” the groups said.

Saturday, August 8, 2015

Prevalence in China

In the preface to The Politics of Autism, I note that we need more comparative studies of autism.  At Autism Research, Xiang Sun and colleagues -- including Simon Baron-Cohen -- have an article titled "Exploring the Underdiagnosis and Prevalence of Autism Spectrum Conditions in Beijing." The abstract:
Previous studies reported that the prevalence of Autism Spectrum Conditions (ASC) in mainland China is much lower than estimates from developed countries (around 1%). The aim of the study is to apply current screening and standardized diagnostic instruments to a Chinese population to establish a prevalence estimate of ASC in an undiagnosed population in mainland China. We followed the design development used previously in the UK published in 2009 by Baron-Cohen and colleagues. The Mandarin Childhood Autism Spectrum Test (CAST) was validated by screening primary school pupils (n = 737 children age 6–10 years old) in Beijing and by conducting diagnostic assessments using the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview-Revised. The prevalence estimate was generated after adjusting and imputing for missing values using the inverse probability weighting. Response was high (97%). Using the UK cutoff (≥15), CAST performance has 84% sensitivity and 96% specificity (95% confidence interval [CI]: 46, 98, and 96, 97, respectively). Six out of 103 children, not previously diagnosed, were found to the meet diagnostic criteria (8.5 after adjustment, 95% CI: 1.6, 15.4). The preliminary prevalence in an undiagnosed primary school population in mainland China was 119 per 10,000 (95% CI: 53, 265). The utility of CAST is acceptable as a screening instrument for ASC in large epidemiological studies in China. Using a comparable method, the preliminary prevalence estimate of ASC in mainland China is similar to that of those from developed countries.