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Monday, March 31, 2014

Measles, Vaccines, Autism, and Diagnosis

Russell Saunders writes at The Daily Beast:
As a pediatrician, the number that jumped out most to me [from the CDC report] is that only 44% of children with ASD diagnoses had a documented developmental evaluation by the time they reached 36 months of age. Though some ASD patients can present with very subtle findings early on, it worries me that 89% of them had documented concerns about their development by the same age. It seems that a large proportion of these patients are going too long without being evaluated even after problems are noted. Screening for delays in speech, motor, and social development during infant and toddler well-child checks is one of the most important things medical providers do, with the goal to get children into necessary therapies as promptly as possible. For many of these patients, it appears they didn’t get the attention and help they needed as early as they ought have.
Of course, what we would most like to know is what’s responsible for the rise in autism. It’s very frustrating to see these data and have little explanation for them. For all the pseudoscience and controversy, one of the few things we can know with certainty is that vaccines aren’t responsible. (In an amusing addendum to the week’s news, Donald Trump made the exciting career leap from laughingstock phantom gubernatorial candidate to laughingstock public health expert. With a series of tweets linking vaccines to the rise in autism, Trump proved to the world he understands medical science just as well as he grasps his own political appeal.)
The Sacramento Bee reports:
More than 16,000 California children entered kindergarten this school year without vaccinations because of their parents’ personal beliefs, up 15 percent from the prior year and more than double the number from six years ago, according to new figures from the California Department of Public Health.
The numbers were released as California battles an outbreak of measles – a disease mostly eradicated in California following decades of mass vaccination – involving almost 50 people. Medical experts say waning vaccination rates are one cause of the outbreak.
It’s very concerning to me and to those who work in vaccines,” said Dr. Mark Sawyer, a specialist in pediatric diseases at the University of California, San Diego. “The rates have been steadily going up.”

ABLE Act Cosponsors

On Friday, Autism Speaks reported on the ABLE Act (HR 647 and S 313)
Responding to yesterday's release of the new 1 in 68 autism prevalence estimate, Congressional leaders said the ABLE Act must be part of a national plan to address the public health crisis of autism. Four more House members signed on as cosponsors to the bill, raising the total to 351, while Sen. James Inhofe (R-OK) became the 70th Senator to become a cosponsor.
Sponsored by Sen. Robert Casey (D-PA) [left] and Rep. Ander Crenshaw (R-FL), the Achieving a Better Life Experience (ABLE) Act, would allow the creation of tax-exempt savings accounts for individuals with disabilities. The funds could be used for housing, transportation, job support, education and other services without jeopardizing eligibility for Social Security or Medicaid benefits.

Sunday, March 30, 2014

Autism Risk: Media Attention v. Scientific Evidence

At the New York Times, Princeton's Sam Wang compares the media attention and scientific evidence about autism risk:
For a variety of studies I asked the same question: How large is the increased risk for autism? My standard for comparison was the likelihood in the general population of autism spectrum disorder. Here’s an example. Start from the fact that the recorded rate of autism is now 1 in 68, according to a report released last week by the Centers for Disease Control and Prevention. If babies born in purple farmhouses have a rate of autism of 2 in 68, this doubling means that the purple farmhouse carries a risk ratio of 2. However, correlation is not causation, and there is no need to repaint that farmhouse just yet.
We can improve our chances of finding true causes by looking before the age of 2, when it becomes possible to diagnose autism. The risk ratio can give perspective where isolated news stories don’t. Media reports have focused on the risk associated with becoming a mother or father in one’s late 30s or after. The story has obvious appeal: Delayed parenthood is common, and readers are understandably anxious. However, parents-to-be should consider that the individual risk to the child is only around 1.4. The risk associated with enhanced or accelerated labor in full-term babies is about 1.2, after other complications are taken into account. And of course, the risk from vaccination is slightly less than 1 — there is no added risk. Even worse, incorrect beliefs about vaccines come with a cost. The return of measles in communities with falling vaccination rates is one recent example.
A highly underappreciated prenatal risk is stress. For pregnant women who take the sometimes-wrenching step of emigrating to a new country, for example, the risk ratio is 2.3. In the fifth through ninth months of pregnancy, getting caught in a hurricane strike zone carries a risk ratio of about 3. Maternal post-traumatic stress disorder during pregnancy is associated with a similar effect. These events are likely to trigger the secretion of stress hormones, which can enter the fetus’s bloodstream and affect the developing brain for a lifetime. Stressors may also lead to maternal illness, the immune response to which may interfere with brain development.

Saturday, March 29, 2014

SAP and Autism

Shirley Wang reports at The Wall Street Journal:
Some employers increasingly are viewing autism as an asset and not a deficiency in the workplace.
Germany-based software company SAP AG SAP.XE +0.69% has been actively seeking people with autism for jobs, not because of charitable outreach but because it believes features of autism may make some individuals better at certain jobs than those without autism.
It's a worthy initiative, according to disability experts, since 85% of adults with autism are estimated to be unemployed.
Piloted in Germany, India and Ireland, the program is also launching in four North American offices, according to an announcement Thursday.

SAP aims to have up to 1% of its workforce—about 650 people—be employees with autism by 2020, according to Jose Velasco, head of the autism initiative at SAP in the U.S.
SAP isn't the only company to have such a program. In the U.S., mortgage lender Freddie Mac FMCC -1.80% has offered career-track internships since 2012, including in IT, finance and research.
The lender hired its first full-time employee from the program in January, according to a Freddie Mac spokeswoman. In IT, the company has found that interns often perform well in testing and data-modeling jobs that require great attention to detail and focus as well as a way of seeing things that might not have been anticipated by the developers.
 "Harnessing the unique skills of people on the autism spectrum has the potential to strengthen our business and make us more competitive," according to the lender's policy.
To be sure, as with any group, people with autism have a range of interests and abilities. SAP is working with a Danish autism-focused training and consultancy firm, Specialisterne, which carefully screens and interviews the candidates to find the appropriate matches before sending them to SAP to evaluate.


Friday, March 28, 2014

More on the CDC Report

CDC's new estimate of autism prevalence is generating a good deal of commentary.

From CNN:
The earlier a child is diagnosed with autism, the better their chances of overcoming the difficulties that come with the disorder.

"It's not a cure, but it changes the trajectory," says Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute and professor of neurology at Johns Hopkins University.
"We need to continue our efforts to educate the health care community and general public to recognize the developmental problems associated with ASD and other developmental disorders at earliest age possible, so that intervention can be initiated, bad habits can be avoided and families will know what's wrong with their child," says Dr. Max Wiznitzer, a pediatric neurologist at Rainbow Babies and Children's Hospital in Cleveland who diagnoses and treats children with autism.

...[E]xperts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.
"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.
Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.
"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as social anxiety, ADHD with social immaturity and intelligence problems," he says.
The Philadelphia Inquirer reports:
A new federal report shows yet another increase in the percentage of children with autism, with New Jersey having the highest rate of 11 states studied.

Walter Zahorodny, an epidemiologist and psychologist at Rutgers New Jersey Medical School who directed data collection in New Jersey, said the new report should put to rest the argument over whether the increase in autism diagnoses stems from growing awareness or reflects growing numbers of children with the disabling condition.

"It's a true increase," he said. "It's a change of great magnitude. It's silly to go on debating that." He expects the numbers to climb higher before they plateau.

Jennifer Pinto-Martin, an epidemiologist in the University of Pennsylvania School of Nursing who worked on previous versions of the report, is not so sure. While the CDC has been using the same definition for many years, she said, changing attitudes have made it easier to get the diagnosis.

Both agreed that one reason New Jersey's numbers are high is that the state has particularly good record-keeping and services.
Autism Speaks reports:
During a press conference hosted by Autism Speaks following the CDC announcement, Senate and House leaders called for the reauthorization of the Combating Autism Act (CAA) and enactment of the ABLE Act to help address the "aging-out" issue as an estimated 500,000 children mature into adulthood over the next 10 years.
Enacted in 2006 and reauthorized in 2011, the CAA has dedicated $1.7 billion in federal funding for research through the National Institutes of Health, the prevalence monitoring conducted by the CDC, and detection training through the US Department of Health and Human Services. The law will expire September 30 unless Congress acts.
The ABLE Act, (Achieving a Better Life Experience Act), would allow the creation of tax-free savings accounts for individuals with disabilities to provide for their housing, transportation, job support, education and other needs. The legislation has extraordinary support with 70 cosponsors in the Senate and 350 of the 435 House members.
"To my mind, it’s a clarion call to continue -- in fact increase -- our efforts on the federal level into research and services and support for individuals with autism and their families," said Sen. Robert Menendez (D-NJ), the Senate sponsor of the 2011 CAA reauthorization, during the Autism Speaks press conference.
"I hope we can think about at least creating some new opportunities" in the new CAA reauthorization legislation, Menendez said. "This aging out question is a critical question for families across (New Jersey) and across the country. The challenge on the autism disorder spectrum doesn’t stop at age 18 or 21. It continues."
The House sponsor of the 2011 reauthorization bill, Rep. Chris Smith (R-NJ), also demanded action
"The information is not just disturbing, it is numbing," Smith said. "Statistics are sometimes bandied around Washington and people pay scant notice to it. But this ought to mobilize not just the federal government, but state governments and local governments to work in partnership."

Thursday, March 27, 2014

One in 68

A release from the Centers for Disease Control and Prevention (emphasis added below):
The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD). This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.
The surveillance summary report, “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” was published today in the CDC’s Morbidity and Mortality Weekly Report. Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed.
The data continue to show that ASD is almost five times more common among boys than girls: 1 in 42 boys versus 1 in 189 girls. White children are more likely to be identified as having ASD than are black or Hispanic children.
Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability. The study found that almost half of children identified with ASD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.
“Community leaders, health professionals, educators and childcare providers should use these data to ensure children with ASD are identified as early as possible and connected to the services they need,” said Coleen Boyle, Ph.D., M.S. hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities.
The report also shows most children with ASD are diagnosed after age 4, even though ASD can be diagnosed as early as age 2. Healthy People 2020, the nation’s 10-year health objectives, strives to increase the proportion of young children with an autism spectrum disorder (ASD) and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner.
The news media will focus on the increased prevalence figure and may overlook this passage:
The global prevalence of autism has increased twentyfold to thirtyfold since the earliest epidemiologic studies were conducted in the late 1960s and early 1970s. At that time, prevalence estimates from European studies were one in 2,500 children in the population (2), and by the 2000s prevalence estimates from large surveys were 1%–2% of all children (3–5). Although the underlying reasons for the apparent prevalence changes are difficult to study empirically, select studies suggest that much of the recent prevalence increase is likely attributable to extrinsic factors such as improved awareness and recognition and changes in diagnostic practice or service availability (5,6).
5. Blumberg SJ, Bramlett MD, Kogan MD, et al. Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. children: 2007 to 2011–2012. Natl Health Stat Rep 2013;65:1–11.
6. Schieve LA, Rice C, Devine O, et al. Have secular changes in perinatal risk factors contributed to the recent autism prevalence increase? Development and application of a mathematical assessment model. Ann Epidemiol 2011;21:930–45.

Autism and the Developing Brain

U-T San Diego reports:
Autism begins in pregnancy with subtle disruption of the brain's cortex, according to a study led by UC San Diego researchers. Moreover, it identifies a mechanism of abnormal gene activity explaining how the disruption causes autism.
If the study is confirmed, a physical cause will at last have been identified for autism, a developmental disorder whose origins are frustratingly vague. And a cause will give scientists a target for therapies and prevention. And further studies may find other brain abnormalities that have eluded discovery.
The study was published online Wednesday in the New England Journal of Medicine. Rich Stoner, Maggie L. Chow, and Maureen P. Boyle, all of UCSD, were first authors. Eric Courchesne of UCSD and Ed Lein of the Allen Institute for Brain Science in Seattle were senior authors.
Dr. Thomas Insel, director of the National Institute of Mental Health, said the authors used advanced methods to examine cellular and molecular markers in more detail than previous research. But he said the study “highlights the critical need” for autopsy brain tissue to gain a better understanding of autism.
The autopsy rate has decreased substantially in recent decades. 

Wednesday, March 26, 2014

Reid and McConnell Cosponsor ABLE Act

A Monday release from Senator Bob Casey (D-PA):
Today U.S. Senators Bob Casey (D-PA) and Richard Burr (R-NC) announced that Senate Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) have cosponsored their bill, the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647). This legislation would provide an improved quality of life for individuals with disabilities through tax-advantaged savings accounts. The legislation now has the support of 68 Senators and 345 members of the House making it one of the most widely supported bills in all of Congress. Having leaders Reid and McConnell back this bill adds to the growing momentum to pass the legislation this year.
“I want to thank Senators Reid and McConnell for signing on to the ABLE Act. Having their support is critical to getting this legislation passed, and I’m hopeful that we’ll do just that in the coming months,” Senator Casey said. “The ABLE Act now has support from a strong majority in both parties because it is a commonsense approach that will help families of children with disabilities save and pay for their long term care. Passing the ABLE Act will help give these families peace of mind in knowing that they can better save for their loved ones.”
“The news today that both Senate leaders have agreed to cosponsor the ABLE Act is giving new hope to the severely disabled and their families across America,” said Senator Burr. “ABLE is a commonsense piece of legislation that helps parents of the severely disabled save and prepare for their child’s lifetime of expenses. With such broad bipartisan support in both houses of Congress, it is my hope that 2014 is the year we finally pass the ABLE Act.”
The legislation would amend Section 529 of the Internal Revenue Service Code to allow use of tax-free savings accounts for individuals with disabilities. The bill, first introduced in 2006, would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

Tuesday, March 25, 2014

Incidence and Demographics

At Medical Xpress, Laura Geggel writes of a new study in The Journal of Autism and Developmental Disorders:
The greatest increase in incidence among girls came from diagnoses of two subcategories of autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). Both categories are being subsumed into the autism diagnosis in the newest edition of the Diagnostic and Statistical Manual (DSM-5), the American Psychiatric Association's guidelines for diagnosis. And both are generally thought to represent the higher-functioning end of the autism spectrum.
"That is in a way interesting because it goes against the idea that girls are always more severely afflicted [than boys]," says Eric Fombonne, professor of psychiatry at Oregon Health and Science University, who was not involved in the research.
Better diagnostic practices may explain these large hikes in incidence, says Maureen Durkin, professor of population health sciences and pediatrics at the University of Wisconsin in Madison.
"There's much more awareness of autism," say Durkin, who was not involved in the study. "There's much more screening going on. And the newer generation of clinicians are being trained in this so they are more likely to see it."
This increased attention to autism and its symptoms may also explain the rise in diagnoses of teenagers and adults.
An age-stratified analysis shows that children between the ages of 4 and 13 make up about 63 percent of the new autism cases. The fastest acceleration in new cases is in those diagnosed between 14 and 20 years of age.
Individuals diagnosed between 21 and 65 years of age account for about 9 percent of the new cases—but their proportion also significantly increased over the time frame of the study. Like girls, many of the adults are diagnosed with higher-functioning forms of autism, such as Asperger syndrome and PDD-NOS.
"If the incidence [in adults] is increasing, it just has to do with recognition of cases that have been missed up to that age," Fombonne says. "It cannot be that you develop autism at age 50." [emphasis added]

Regressive Autism and the Media

Jennifer Richler writes at Slate:
A few days ago, an old friend sent me a panicked email. She had just finished reading Ron Suskind’s beautiful essay in the New York Times Magazineabout raising a son with autism: “Reaching My Autistic Son Through Disney.” Suskind describes how, at almost 3 years of age, his son Owen “disappeared.” The child was once “engaged, chatty, full of typical speech,” but then he stopped talking, lost eye contact, even struggled to use a sippy cup.
The kind of developmental pattern that Suskind’s son experienced is very rare. Most children with autism show signs of the disorder in the first two years of life. Yes, studies have suggested that about one-third of children with autism experience some kind of regression, but most of these children do not have typical development to begin with. Instead, they have early delays and lose some of the skills they had attained. This finding shows up time and time again; it’s what I found when I published a paper on regression in 2006, and it’s what researchers are finding today. Losses also usually occur considerably earlier than Owen’s. A recent meta-analysis of 28 studies found the average age of regression to be a bit older than 21 months; studies consistently report a range of 15 to 30 months.
What’s more, recent research strongly suggests regression is not an all-or-nothing phenomenon. In one study of 167 children on the autism spectrum, the majority acquired and lost some skills within the first two years of life.
Stories such as Owen’s make it seem as though unusual experiences are commonplace, and they unintentionally feed parents’ already acute autism-phobia, a creeping anxiety about autism that leads parents to worry when their children don’t meet developmental milestones precisely on schedule. I blame this anxiety partly on alarmist ad campaigns by autism research and advocacy agencies, which often describe the prevalence of the disorder in sensationalist terms.

Monday, March 24, 2014

Cure Du Jour: MSG

Many posts have discussed purported "cures" for autismThe San Francisco Chronicle reports:
Katherine Reid, a Bay Area biochemist with a daughter who was autistic, believes she may have found an antidote to the neurodevelopment disorder - and it's as simple as changing a person's diet.
.... She thinks what it comes down to, at least for some people with autism, is permanently eliminating just a single chemical compound known as monosodium glutamate, or MSG - an ingredient many people associate with Chinese food.
While there is no science to back up many of her claims, [emphasis added] Reid said the most convincing evidence to her is the results she saw in her daughter. At age 7, Brooke is completely cured, Reid said. And from all outward appearances that seems to be true.

Dr. Robin Hansen, professor of pediatrics at UC Davis and a developmental behavior pediatrician who recently led a study for the university's Mind Institute, said it's fairly common for parents to seek out alternative treatments for their children with autism. Nearly 7 percent of the children with autism they studied were on gluten- and casein-free diets.
"We don't have a lot of diet research to look at, because these studies are difficult to do," she said, describing the trickiness of monitoring a child's food intake in a double-blind study. "And no one has done an MSG study. But what we do have doesn't show a marked difference even with children with gastrointestinal problems."
Still, she wouldn't dissuade parents from trying as long as they make sure the diet is balanced and to keep in mind that it's a big undertaking.
A single case proves nothing, especially when it does not involve rigorous measures (e.g., ADOS) before and after the intervention.

Reid's claims are not new:  she said the same things at Santa more than a year ago and has a nonprofit.

Sunday, March 23, 2014

Discipline and Disability

A release from the US Department of Education:
The U.S. Department of Education's Office for Civil Rights (OCR) released today the first comprehensive look at civil rights data from every public school in the country in nearly 15 years.
The Civil Rights Data Collection (CRDC) from the 2011-12 school year was announced by U.S. Department of Education Secretary Arne Duncan and U.S. Attorney General Eric Holder at J.O. Wilson Elementary School in Washington, D.C.
This is the first time since 2000 that the Department has compiled data from all 97,000 of the nation's public schools and its 16,500 school districts—representing 49 million students. And for the first time ever, state-, district- and school-level information is accessible to the public in a searchable online database at
At Disability Scoop, Michelle Diament reports:
Kids with disabilities represent three-quarters of children physically restrained and 58 percent of those placed in seclusion or some other form of involuntary confinement at school, the Education Department said. Such children are also more than twice as likely to receive an out-of-school suspension.
What’s more, federal officials found that children served under the Individuals with Disabilities Education Act account for a quarter of all students who are arrested and referred to law enforcement by schools.
Meanwhile, kids with disabilities represent just 12 percent of the nation’s students.

Saturday, March 22, 2014

Conspiracy Theory

Reuters reports on an article in  JAMA Internal Medicine:
About half of American adults believe in at least one medical conspiracy theory, according to new survey results.
Some conspiracy theories have much more traction than others, however.
For example, three times as many people believe U.S. regulators prevent people from getting natural cures as believe that a U.S. spy agency infected a large number of African Americans with the human immunodeficiency virus (HIV).
J. Eric Oliver, the study's lead author from University of Chicago, said people may believe in conspiracy theories because they're easier to understand than complex medical information.
For the new study, he and his colleague used data from 1,351 adults who answered an online survey between August and September 2013. The data were then weighted to represent the U.S population.
The participants read six popular medical conspiracy theories and then indicated whether they had heard of them and whether they agreed or disagreed with them.
They include the theory that the government knows cell phones cause cancer but does nothing about it, that genetically modified organisms are being used to shrink the world's population, that routine vaccinations cause autism and that water fluoridation is a way for companies to dump dangerous chemicals into the environment.
Some 49% of the survey participants agreed with at least one of the conspiracies.
In fact, in addition to the 37% of respondents who fully agreed that U.S. regulators are suppressing access to natural cures, less than a third were willing to say they actively disagreed with the theory.
With regard to the theory that childhood vaccines cause psychological disorders like autism and the government knows it, 69% had heard the idea, 20% agreed with it and 44% disagreed.

Friday, March 21, 2014

Mandate Fails in GA, Proceeds in KS

The Georgia House failed to act on autism mandate legislation before its session ended yesterday, effectively killing it for the year. But as Kansas First News reports, a mandate measure is moving in Kansas:
Children with autism in Kansas are one step closer to getting healthcare coverage.
The House advanced a bill Thursday that would require state-regulated insurance companies to cover the diagnosis and treatment of children with autism. 
The House Insurance Committee amended House Bill 2744 Monday and recommended it for approval. 
Committee members amended the bill to require insurers to cover a therapy called applied behavior analysis (ABA) for up to 25 hours a week for children diagnosed by age 4. 
Treatments would be covered for four years from the time of diagnosis. After that, coverage for therapy could be limited to 10 hours per week. 
Children diagnosed after age 6 would be eligible for 10 hours per week, and coverage would end at age 13. 
An earlier version of the bill would have limited therapy coverage to 10 hours a week through age 18. 
The bill now moves to the Senate.

Thursday, March 20, 2014

Lowry on the Anti-Vaccine Movement

At National Review, Rich Lowry kicks the anti-vaccine movement to the curb:

A study in the journal Pediatrics found that the 2010 whooping-cough outbreak in California — when the state had the highest number of cases since 1947 — hit hardest in areas with high levels of nonvaccination. In 2013, measles cases tripled nationwide. Outbreaks were centered in religious communities in Brooklyn, N.Y., Texas, and North Carolina that had resisted vaccination. New York City has another small outbreak right now.

In the panic created by the Wakefield article, England saw MMR vaccination rates fall to 80 percent in 2004 and Wales to 78 percent. In 2012, England and Wales had the highest number of measles cases in 18 years.

These are dangerous illnesses, and the victims of an outbreak are often infants too small to have yet received vaccinations. Jenny McCarthy styles herself a “mother warrior.” If so, the kids sickened in the fallout from reduced vaccinations are the victims of friendly fire. Nothing good can come from undoing one of the miracles of medical progress.

Wednesday, March 19, 2014

Insurance Legislation in Maine

AP reports:
 The Maine Senate has endorsed a measure that would allow more children to receive private insurance coverage to treat autism. 
Current Maine law mandates that insurance companies provide coverage for treatment of autism spectrum disorder only for children ages 5 and under. The measure would raise that to age 10. 
Supporters say some Maine children are being prevented from getting proper treatment or are forced onto Medicaid, which does cover treatment. 
Under the original bill, the covered age would have risen to 21. Maine's Bureau of Insurance said that would result in higher monthly premiums of nearly $1.50 per person. The amended measure would likely mean a smaller premium increase. 
The bill introduced by Democratic Sen. Colleen Lachowicz of Waterville faces further votes in the House and Senate.

Tuesday, March 18, 2014

Jenny McCarthy, Vaccines, and Twitter

Alexandra Petri writes at The Washington Post:
“What is the most important personality trait you look for in a mate? Reply using #JennyAsks,” McCarthy tweeted 
Tweeters were quick to seize the opportunity that had been handed to them on a large golden platter, garnished with parsley and with an apple stuck in its mouth. The hashtag was instantly hijacked by people promoting vaccination.

(Phil Plait, at Bad Astronomy, has a good selection.)

This is great and encouraging, if you like science. But there is one problem with the backlash. Actually, there’s two: it makes it seem as though this is a debate, however one-sided, and it just preaches to the choir. The choir hears someone saying “Hey, can you believe that in 2014, some crazy person still believes the earth is flat?” But someone else hears, “Some people still believe the earth is flat. Others call them ‘crazy.’ ” Every time the Round Earthers resoundingly win a debate, you perpetuate the notion that it’s a debate, not a set of facts that are simply not up for discussion.

Sunday, March 16, 2014

Celebrities, Vaccines, and Preventable Diseases

Reality show TV star Kristin Cavallari says that she won't vaccinate her children because of the "scary statistics" about autism.

Dr. Swati Bhobi writes at Crain's Chicago Business:
In our practice, which is a public health facility, we encounter a handful of parents who refuse all vaccines based on their religious beliefs or their concerns about the safety of vaccines, which has been stroked by celebrity opponents. Invariably the concern about autism and the measles vaccine is the biggest roadblock we encounter in these parents,
What we have also noticed is that the most resistance to vaccinations typically comes from second- or third-generation Americans. They have not witnessed firsthand the devastation inflicted by diseases like measles, but they have seen a child or two with autism — which makes them more wary of autism than measles. They also happen to be very Internet-savvy, and many are followers of celebrities who crusade against immunizations. 
My own experience with such parents is that they do come around with gentle reminders about the horrors inflicted by these once-dreaded diseases in not-so-fortunate nations of the world. As a health care provider, I always remind the parents that these now-rare diseases conquered by the universal vaccination success in the country can still come to haunt them — and sadly, most physicians trained in this country may not even be able to recognize them in a timely fashion because these illnesses are so rare now.

Saturday, March 15, 2014

Another Study of Possible Environmental Causes

Many posts have discussed purported causes of autism, including polllution.  Newsweek reports on a study by Andrey Rzhetsky and colleagues.
To get information about environmental factors (which the study laments are “mostly undocumented”) they used an interesting proxy: diagnoses for male genital malformations. Specifically, if an area had a high rate of these kinds of malformations—micropenis, for example, or another disorder called hypospadias—that suggests possible environmental toxins in the area, like lead or pesticides, the study says. As Rzhetsky tells Newsweek, “The idea of the study is to use malformation rates in newborn boys as the canary in the coal mine.” (It was just published in PLOS Computation Biology.)
They also incorporated a large amount of other data, including income levels, ethnicity, the amount of viral infections reported, whether an area is urban or rural, and state diagnostic standards. Their conclusions were unequivocal: the greater amount of malformations in boys, the greater the autism rates in the area, suggesting a correlation between environmental factors and autism diagnoses. In fact, the study reports “an increase in ASD incidence by 283% for every percent increase in the incidence of malformations” in males. Rzhetsky says he was surprised—he didn’t expect the correlation “to be so profound.”
That wasn’t all they found. For example, states with stricter diagnostic standards had a lower amount of ASD diagnoses. In addition, income levels affected autism diagnoses — slightly. As income level went up, so to do diagnosis rates for ASD and ID, but not by much. That’s probably because wealthier families have access to more accurate diagnoses, Rzhetsky suggests.
Some autism experts express skepticism about what the study really shows. “I’m not so impressed,” says Eric Fombonne, a professor at Oregon Health & Science University and an autism researcher who focuses on its epidemiology. His biggest problem with the study falls under what can be called “the ecological fallacy”—basically that correlation is not the same thing as causation, especially when looking at the big picture. For instance it would be a fallacy to assume that just because alcoholism rates are high in a place with high suicide rates, that one is causing the other.
Fombonne also faulted the study for several methodological shortcomings. “The fact they have this significant association [between malformation and autism rates] increases my suspicions of ecological fallacy, because it makes no biological sense at all,” he says.

Friday, March 14, 2014

Movement in Georgia, Study in South Dakota

Medical marijuana is one step closer to becoming legal in Georgia, but it's taken a different form from its original version that passed the House 171-4 last week.

The Senate Health and Human Services committee unanimously approved House Bill 885 on Wednesday, which would legalize a form of medical marijuana in Georgia.

But the bill now also requires insurance companies to cover autism treatment for children ages 6 and under.

A few minutes before the vote, the committee's chairwoman, Renee Unterman, said the medical marijuana bill will be combined with the autism bill.

"We also combined the autism bill with it. We're calling it the Care for Kids Act," Unterman told 13WMAZ. "All the people in this legislature care about the children of Georgia."
AP reports:
The death of a bill to require insurers to cover autism inspired a South Dakota legislator to set up a task force on the issue.

"This came really hard and fast to me," said Rep. Scott Munsterman, R-Brookings. "Everyone agrees they needed to have that discussion whether (that bill) failed or not."

A South Dakota special committee of representatives and senators agreed Thursday on parameters for that study on autism spectrum disorders.

The task force would explore the issue and make policy suggestions. The study would cover insurance and treatment costs, availability of services and treatment protocols.

The state's human services and labor and regulation departments would collaborate on the project.

Representatives in the House and the Senate voted unanimously Thursday to accept the special committee's plan. Gov. Dennis Daugaard's administration has expressed support for the measure.

Thursday, March 13, 2014

Mandate Passes Utah House

The Salt Lake Tribune reports:
After years of parents pushing for it, a bill to require health insurers to pay for autism treatment for kids has finally passed both houses of the Legislature.
The House passed SB57 on a 69-3 vote. But because it was amended, it was sent back to the Senate for a final vote before it may go to Gov. Gary Herbert for signature. The Senate earlier passed it 18-7.

The bill would add Utah to the list of 34 states that require insurers to pay for autism treatment for children, but the coverage would not be effective until Jan. 1, 2016.
"There’s a medical adage you never want to be the first or the last to embrace a therapy," Sen. Brian Shiozawa, R-Cottonwood Heights, the bill’s sponsor and a physician, said earlier. "This is not an investigational drug or therapy. We know this is safe and that it works."

Wednesday, March 12, 2014

Why the Georgia Mandate Has Support

At The Atlanta Journal-Constitution, Jim Galloway explains why SB 397, an autism mandate bill, is getting support in Georgia:
“It’s the right thing to do for Georgia’s children,” said Tim Golden, R-Valdosta, chairman of the same Senate Insurance Committee that is likely to pass out HB 707 today.
Lt. Gov. Casey Cagle has also placed his own prestige behind the autism coverage bill, testifying for it in committee – the first time he’s done so in his eight years as president of the Senate.
And Gov. Nathan Deal may have given his sotto voce endorsement. For the first time, the governor’s new budget includes extra cash to make sure insurance policies for state employees include treatment coverage for autism.
But neither the NFIB nor the Georgia Chamber of Commerce intend to “score” lawmakers who vote in favor of the autism bill – which amounts to quiet recognition of the clout behind the measure.
Part of the change in attitude is based on science. An abundance of data shows that the sooner a child is diagnosed and engaged in behavioral therapy, the less severe the repercussions will be later in life. This something that Golden points out when he takes fellow lawmakers on tours of the Marcus Autism Center, which operates under the umbrella of Children’s Healthcare of Atlanta and is the largest center for autism treatment in the Southeast.
Another thing to keep in mind: Bernie Marcus, the co-founder of Home Depot has pumped tens of millions of dollars into autism research, making Atlanta one of the top three study hubs in the nation. He is also a prolific donor to Republican causes.
Even tea party-types have gotten onboard. State Sen. Josh McKoon, R-Columbus, noted that the average public school student costs the state $6,556. Autism nearly triples that price.
“The whole notion that an ounce of prevention is worth a pound of cure comes into play here,” McKoon said. “Yes, the state is mandating this coverage. But the indirect tax that is levied through the mandate – the taxpayer comes out ‘way ahead.”

Tuesday, March 11, 2014

Watered-Down Legislation

In Jackson, Mississippi, the Clarion-Ledger reports:
Lawmakers on Monday approved a gutted version of a bill that would have required the State and Schools Employee Health Insurance Plan to cover autism therapies but now is reduced to a study.
It heads to Gov. Phil Bryant for a signature.
“It’s a worthless version,” said the bill’s author, state Rep. Steve Massengill, R-Hickory Flat. “I am very disappointed, but we’ll try again next year.”
House Bill 542 says the State and School Employees Health Insurance Management Board will study whether to expand its coverage for autism and file a report with the Legislature on or before Dec. 1.
The original version had required the plan to cover diagnosis and therapies for autism.
House Insurance Chairman Gary Chism had pushed for the original version of the bill, but on Monday indicated the Senate wasn’t moving and recommended the House concur.
In Kansas, the Topeka Capital-Journal reports:
A long-sought bill mandating insurance coverage for childhood autism treatment was described as a compromise Monday, but several advocates said it had been too watered-down to mollify the insurance industry.

Monday's testimony was scheduled for proponents of House Bill 2744, but several of those who testified Monday said the bill was now unacceptable due to coverage caps and provider licensing requirements.

"If you were in my position, would you vote for this bill or not?" Rep. John Doll, R-Garden City, asked Mike Wasmer, an Olathe resident and representative from Autism Speaks.

"I would not," Wasmer said.

Rep. Barbara Bollier, R-Mission Hills, asked early in the hearing where the bill came from, which she later said was an attempt to discern who had been at the table when it was devised.

"I needed a reference point when they said 'this is a compromise,' " Bollier explained after the hearing. "I needed to know what that meant and who were the compromisers."

Wasmer said the compromise was between insurance companies not eager to see an autism mandate go forward and Rep. John Rubin, R-Shawnee, who has promoted the mandate for years.

"No parent, no provider group, no parent advocacy group was at the table," Wasmer said. "This was a discussion between Rep. Rubin and the insurance lobby."

Monday, March 10, 2014

Insurance Companies Draft Kansas Bill

The Kansas City Star reports on autism legislation in Kansas:
Lawmakers, led by Republican state Rep. John Rubin of Shawnee, have negotiated a deal with insurers that would extend autism coverage to about 250 children under 18 starting in 2015. Rubin’s agreement was introduced as a bill last week. Hearings on the measure are scheduled for this week.
The bill is much narrower than what advocates for the autistic have pushed.
• Rubin’s plan would provide yearly coverage for 520 hours of applied behavior analysis, or 10 hours a week. Advocates for children with autism pushed for more than 2,000 hours a year, or 40 hours a week.
Wasmer said 20 to 25 hours of treatment each week is generally considered a minimum with 40 hours prescribed in more severe cases.
• Rubin’s plan requires anyone who provides applied behavior analysis to be licensed by the state starting in 2016.
The insurance industry says it wants licensing to ensure quality care. But advocates for autistic children worry that establishing a licensing system might delay coverage and access to service. Missouri licenses the same type of therapists. Just 28 of Missouri’s 115 counties had licensed therapists as of Jan. 21.
• Rubin’s proposal applies initially to employers with more than 50 employees with health plans in place before the federal Affordable Care Act was enacted in 2010. The measure would extend to health plans for individuals and small employers in 2016, adding coverage for an estimated 500 more children.
Rubin said it was politically impossible to cover every child with autism — estimated at 8,400 in Kansas — because the federal Affordable Care Act requires the state to pay for any new mandate added to health plans sold under the law.

Read more here:

Sunday, March 9, 2014

IDEA Full Funding Act 2014

A release from Rep. Tim Walz (D-MN):
Today Congressmen Chris Van Hollen (D-MD), David McKinley (R-WV), Tim Walz (D-MN), Chris Gibson (R-NY), Jared Huffman (D-CA), and David Reichert (R-WA) announced introduction of the bipartisan IDEA Full Funding Act. In 1975, Congress took the critical step of passing the Individuals with Disabilities Education Act (IDEA) and guaranteeing that every child with disabilities would have the opportunity to reach his or her full potential. At that time, the federal government committed to pay 40 percent of the average per pupil expenditure for special education. However, that pledge has never been met, and current funding is at just 15.3 percent. The IDEA Full Funding Act would require regular increases in IDEA spending to finally meet our commitment to America’s children and schools.
The proposal has come up before. A previous version had the acronym Everyone Deserves UnConditional Access to Education (EDUCATE) Act.

Saturday, March 8, 2014

Utah Mandate Changes and Advances

KSTU in Salt Lake City reports:
Insurance companies may soon be forced to recognize autism spectrum disorders and treat them.
A bill that would do just that and help thousands of Utah children passed a major hurdle on Capitol Hill Friday.
“What we did in the compromise is identify that group of children who are most vulnerable who would be helped by this particular legislation,” said the bill’s sponsor, Senator Brian Shiozawa of Cottonwood Heights.
Autistic children between ages 2 and 9 would have insurance coverage under Senate Bill 57.
“It doesn’t serve all of the families that we originally wanted to,” said Christine Passey, Vice-President of the Utah Autism Coalition. “But as legislation goes, we work through the process as we go and this is an amazing step, this is an amazing bill, and it was great.”
The legislation passed out of the House rules committee and insurance companies who once fought the bill, concerned that premiums would spike, have now agreed to provide 600 hours of therapy a year starting in 2016. It was a hard concession, the bill’s sponsor said, but a necessary one to get insurance providers on board.
“This agreement was vital for the House rules to also agree to this and take it forward,” Sen. Shiozawa said.
“We actually got out of the committee unanimously,” Passey said. “ I don’t think there’s words to describe what that was like for the families that have been working so hard.”

Friday, March 7, 2014

South Dakota Mandate Setback

The Sioux Falls Argus Leader reports that a South Dakota autism insurance mandate bill had a setback in a state senate committee:
Rep. Scott Munsterman’s bill sought to require some health care plans to cover ABA therapy and other autism treatments. From 60,000 to 90,000 citizens would be affected — primarily those who get their coverage from larger employers, and those with smaller plans that have been grandfathered in under the federal Affordable Care Act. Small business insurance plans and nongrandfathered plans on the marketplace would not be affected.
Munsterman originally proposed requiring all plans to cover ABA therapy. But under the Affordable Care Act, states that impose new coverage mandates on insurance companies are required to pay for that cost. To dodge a budget battle and weaken opposition from Gov. Dennis Daugaard, Munsterman narrowed the bill to apply only to those plans the state wouldn’t have to pay for.
But insurance companies said they shouldn’t have to pay for such expensive treatment, which they said would force them to pass costs on to customers in the form of higher premiums.
Wellmark previously estimated it might cost as much as $7 per member per year more to cover ABA treatment.
The Senate Commerce and Energy Committee voted 5-2 to kill the bill, with Sens. Ryan Maher and Angie Buhl O’Donnell opposed.
But supporters aren’t giving up. Munsterman is looking at ways to bypass the Senate committee, which could include sticking the autism language into another bill. That showdown probably will come on Monday.

Thursday, March 6, 2014

Study: DSM-5 Will Reduce Autism Diagnoses

Many posts have discussed the potential impact of DSM-5. Kristine M. Kulage, Arlene M. Smaldone, Elizabeth G. Cohn have an article in the February 2014 Journal of Autism and Developmental Disorders titled "How Will DSM-5 Affect Autism Diagnosis? A Systematic Literature Review and Meta-analysis."  The abstract:
We conducted a systematic review and meta-analysis to determine the effect of changes to the Diagnostic and Statistical Manual (DSM)-5 on autism spectrum disorder (ASD) and explore policy implications. We identified 418 studies; 14 met inclusion criteria. Studies consistently reported decreases in ASD diagnosis (range 7.3–68.4 %) using DSM-5 criteria. There were statistically significant pooled decreases in ASD [31 % (20–44), p = 0.006] and DSM-IV-TR subgroups of Autistic disorder [22 % (16–29), p < 0.001] and pervasive developmental disorder-not otherwise specified (PDD-NOS) [70 % (55–82), p = 0.01]; however, Asperger’s disorder pooled decrease was not significant [70 % (26–94), p = 0.38]. DSM-5 will likely decrease the number of individuals diagnosed with ASD, particularly the PDD-NOS subgroup. Research is needed on policies regarding services for individuals lacking diagnosis but requiring assistance.

Wednesday, March 5, 2014

Autism Policy in California: Forward and Back

In Sacramento, KXTV reports on a hearing of California's Senate Select Committee on Autism and Related Disorders concerning the state's insurance mandate.
More than two years after the new law passed, California legislators met Tuesday for a closer look at their policies with a focus on one particular unintended consequence. While access to the treatment has significantly expanded, some parents have incurred punishing costs for therapy that can be as much as 40 hours per week. That can mean thousands of dollars each year to pay their share of the treatments.

"They can't afford it because of the co-payments or they also can't afford it because of the deductibles," [autism mother Michelle] Heid said.
"The co-pay issue is a real issue as is the deductible issue, and that's one of the things we're going to examine in depth," Senator Darrell Steinberg said just before chairing Tuesday's committee hearing.

At California Healthline, David Gorn writes: of an Autism Society of California survey:
According to the survey, almost 20% of families receiving autism therapy treatment at regional centers have cancelled the health insurance policies of their children, in large part because they can't afford the co-pays and deductibles.
The language shifting co-pays and deductibles [from regional centers] to families was included in the budget trailer bill last year but should be removed now, said Marcia Eichelberger, president of the Autism Society of California.
Ironically, the money-saving move actually might be costing the state money, Eichelberger said, because the regional centers still need to treat the children who are being taken off private insurance. Centers have to pay the full cost of care if a child is moved from private coverage to Medi-Cal, Eichelberger said.
Kristin Jacobson, president of Autism Deserves Equal Coverage, said the survey shows the law requiring insurers to cover autism therapy -- SB 946 by Sen. Darrell Steinberg (D-Sacramento) -- is working. The problem, she said, is that the survey shows a high level of dissatisfaction that correlates with the percentage of people affected by the new co-pay/deductible rule.
"About 30% of them don't know about the law," she said. "It's great that 57% of those eligible are getting coverage, but that means 43% aren't getting approved, and the reasons for denial are inappropriate."

Tuesday, March 4, 2014

Vaccine Promotion May Backfire

Political scientist Brendan Nyhan is lead author of  "Effective Messages in Vaccine Promotion: A Randomized Trial," published online in Pediatrics on March 3.  The abstract:
OBJECTIVES: To test the effectiveness of messages designed to reduce vaccine misperceptions and increase vaccination rates for measles-mumps-rubella (MMR).

METHODS: A Web-based nationally representative 2-wave survey experiment was conducted with 1759 parents age 18 years and older residing in the United States who have children in their household age 17 years or younger (conducted June–July 2011). Parents were randomly assigned to receive 1 of 4 interventions: (1) information explaining the lack of evidence that MMR causes autism from the Centers for Disease Control and Prevention; (2) textual information about the dangers of the diseases prevented by MMR from the Vaccine Information Statement; (3) images of children who have diseases prevented by the MMR vaccine; (4) a dramatic narrative about an infant who almost died of measles from a Centers for Disease Control and Prevention fact sheet; or to a control group.

RESULTS: None of the interventions increased parental intent to vaccinate a future child. Refuting claims of an MMR/autism link successfully reduced misperceptions that vaccines cause autism but nonetheless decreased intent to vaccinate among parents who had the least favorable vaccine attitudes. In addition, images of sick children increased expressed belief in a vaccine/autism link and a dramatic narrative about an infant in danger increased self-reported belief in serious vaccine side effects.

CONCLUSIONS: Current public health communications about vaccines may not be effective. For some parents, they may actually increase misperceptions or reduce vaccination intention. Attempts to increase concerns about communicable diseases or correct false claims about vaccines may be especially likely to be counterproductive. More study of pro-vaccine messaging is needed.
 [emphasis added]

Monday, March 3, 2014

Capitalism Meets Autism

CNBC reports:
Private equity and venture capital firms TPG Biotech, Shore Capital Partners, Bay City Capital, Great Point Partners and Google Ventures, plus hedge fund Scopia Capital Management are among the investors slated to attend the 2014 Autism Investment Conference next week in San Francisco.
The event is organized by Autism Speaks in partnership with Google, which is offering a separate workshop for entrepreneurs doing autism-related work.
"While autism has always been part of our population, as our economy has shifted from agrarian work, where everyone could contribute, to urban, social workplaces, this group has moved backward due their social disability. As an investor, I see the opportunity to capitalize on the talents and availability of this group of workers," said Brian Jacobs, co-founder of venture capital firm Emergence Capital Partners.

One area where autistic individuals excel, Jacobs says, is software testing. He expects to back start-ups in the sector as an angel investor. Jacobs' initial interest comes from his son, who has Asperger's syndrome, a type of autism that allows relatively high function.
Examples include Great Point's investment in Pacific Child & Family Associates, a provider of behavior analysis services to children with autism and other related disorders; Trimaran Capital Partners' investment in Educational Services of America, which offers day school services for children with special needs; and Coppermine Capital's bet on City Pro Group, a health-care services business coordinating care to young children with developmental delays and autism in the New York area.
It is great that businesses are talking about employing people with autism.  It's also great that they see profit in the move.  Self-interest is much more reliable than benevolence.  Still, some words of caution are in order.

Beware the Rain Man Myth. Businesses should not equate ASD employment with detail jobs such as software testing. Some people on the spectrum do indeed have an terrific eye for detail, but others do not. Conversely, many ASD people have stereotype-defying talents in art, writing, and other fields.

If businesses are searching narrowly for a Raymond Babbitt, they might miss out on a Temple Grandin or John Elder Robison.

Sunday, March 2, 2014

Autism, Crime, and Judges

Colleen M. Berryessa, "Judicial Perceptions of Media Portrayals of Offenders with High Functioning Autistic Spectrum Disorders," International Journal of Criminology and Sociology, 2014, 3, 46-60 [full text available at link]
In recent years, sensational media reporting focusing on crimes committed by those diagnosed with or thought to have High Functioning Autistic Spectrum Disorders (hfASDs) has caused societal speculation that there is a link between the disorder and violent criminality. No research exists on how and if the judiciary understands and is affected by this coverage. Therefore this study aims to examine how judges perceive and are influenced by media attention surrounding hfASDs and criminality. Semi-structured interviews were conducted with 21 California Superior Court Judges, including questions on media portrayal. Judges perceived general media portrayals of hfASDs in both positive and negative ways. However, almost all judges who had experienced media coverage surrounding hfASDs and criminality identified it as misleading and harmful to public perceptions of the disorder. These findings suggest judges are not exempt from media attention surrounding violence and hfASDs, and they recognize the potential adverse effects of this negative coverage. Although judges’ report their opinions are not affected, the results demonstrate that judges are worried that the public and potentially other criminal justice actors are adversely affected and will continue to be moving forward.

Claire King, Glynis H. Murphy, "A Systematic Review of People with Autism Spectrum Disorder and the Criminal Justice System," Journal of Autism and Developmental Disorders, February 2014 (online first):
This paper provides a systemic review of the available literature on people with autism spectrum disorder (ASD) in the criminal justice system (CJS). The review considers two main types of study: those that examined the prevalence of people with ASD in the CJS and those that examined the prevalence of offending in populations with ASD. In addition, types of offences in people with ASD, co-morbid psychiatric diagnoses, and characteristics of people with ASD who commit offences (including predisposing factors) are considered. A combination of search terms was used in a variety of databases in order to find all of the available literature on this topic, and research studies were included based on specified inclusion and exclusion criteria. It was found that whilst there is an emerging literature base on this topic, there are a wide variety of methodologies used, making direct comparison difficult. Nevertheless it can be concluded so far that people with ASD do not seem to be disproportionately over-represented in the CJS, though they commit a range of crimes and seem to have a number of predisposing features. There is poor evidence of the presence of comorbid psychiatric diagnoses (except in mental health settings) amongst offenders with ASD, and little evidence of the oft-asserted over-representation of certain kinds of crimes. It is recommended that further research of good quality is required in this area, rather than studies that examine populations that are not representative of all those with ASD.