One in Fifty-Nine

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

From the Centers for Disease Control and Prevention:

About 1 in 59 eight -year-old children in 11 communities across the United States were identified as having autism in 2014, according to a report published today in CDC’s Morbidity and Mortality Weekly Report (MMWR) Surveillance Summary.

The data in this report come from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network – a tracking system that provides estimates of the prevalence and characteristics of autism spectrum disorder among more than 300,000 8-year-old children. ADDM is the largest population-based program to monitor autism and the only autism tracking system that examines health and education records.

The latest estimate of 1.7 percent (1 in 59) is higher than the previous ADDM estimate released in 2016, which found a prevalence of 1.5 percent or 1 in 68 children. Some of the change in prevalence could be due to improved autism identification in minority populations – although autism is still more likely to be identified in white children than in black or Hispanic children. This identification is important, because children identified early with autism and connected to services are more likely to reach their fullest potential.

“Autism prevalence among black and Hispanic children is approaching that of white children,” said Stuart Shapira, M.D., Ph.D., associate director for science at CDC’s National Center on Birth Defects and Developmental Disabilities. “The higher number of black and Hispanic children now being identified with autism could be due to more effective outreach in minority communities and increased efforts to have all children screened for autism so they can get the services they need.”

The Autism and Developmental Disabilities Monitoring Network estimates are combined from 11 communities within Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. The 11 communities surveyed in this report represent about 8 percent of 8-year-old children in the United States.

Estimates of autism varied widely among the 11 communities in this report, although five reported similar estimates of 1.3 percent to 1.4 percent. The highest prevalence estimate of 2.9 percent came from a community in New Jersey. Some of the regional differences in autism prevalence estimates among the 11 communities might be due to differences in how autism is being diagnosed and documented.

More work needed to identify autism early in life

The data demonstrate that more work needs to be done to identify children with autism at a younger age and refer them to early intervention:

• Fewer than half of the children identified in the Autism and Developmental Disabilities Monitoring Network received their first autism diagnosis by the time they were 4 years old.
• Although 85 percent of children with autism had concerns about their development noted in their health records by the time they were 3 years old, only 42 percent received a developmental evaluation by that age.
• This lag between first concern and first evaluation may affect when children with autism can begin getting the services they need.

“Parents can track their child’s development and act early if there is a concern.

Healthcare providers can acknowledge and help parents act on those concerns. And those who work with or on behalf of children can join forces to ensure that all children with autism get identified and connected to the services they need as early as possible,” said Dr. Shapira. “Together we can improve a child’s future.”

CDC’s efforts to track autism and promote early identification

The next ADDM report will add data for children who were 8 years old in 2016 and help us better understand whether autism prevalence is changing and whether improvements are being made in early identification of autism. The Autism and Developmental Disabilities Monitoring Network is not a representative sample of the United States, but is a detailed look at autism in these specific communities. For more information about CDC’s autism activities visit www.cdc.gov/Autism.

CDC’s Learn the Signs. Act Early program provides parents, childcare professionals, and healthcare providers free resources, in English and Spanish, for monitoring children’s development. The program offers parent-friendly, research-based milestone checklists for children as young as 2 months of age. CDC’s Milestone Tracker Mobile App can help parents track their child’s development and share the information with their healthcare providers. For more information visit www.cdc.gov/ActEarly.

New Study of Wandering

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress and the legislatures.

A release from the Cohen Children's Medical Center:

A new study by researchers at Cohen Children's Medical Center of New York (CCMC) suggests that more than one-quarter million school-age children with autism spectrum disorder (ASD) or other developmental disorders wander away from adult supervision each year.

More than 26% of children with special needs in the study had wandered away from a safe environment within the past 12 months, say the researchers, with public places being the most common location for it to occur. Children between the ages of 6 to 11 were more likely to wander than those ages 12 to 17.

Appearing Thursday in the online scientific journal PLOS ONE, it is the first published study to report the prevalence of elopement, or wandering, using a nationwide sample of school-age children with developmental disabilities, such as ASD, intellectual disability (ID), or developmental delay (DD).

"Wandering has become a greater concern; said Andrew Adesman, MD, chief of developmental pediatrics at CCMC and senior investigator of the study. "Not only does it pose a significant risk to the safety and well-being of children with developmental disabilities, but fear of wandering can be a daily source of stress and anxiety for parents of affected children."

In 2013, a 14-year-old Long Island boy with autism wandered out of his classroom and past a school security guard. The teen's body was found several months later on the shore of the East River.

"As the prevalence of autism spectrum disorders in the United States continues to rise, there is a need to better understand the behaviors that may compromise the safety and well-being of these children," said Bridget Kiely a research assistant in the division of developmental and behavioral pediatrics at CCMC and principal investigator in the study.

Using data from a 2011 Centers for Disease Control and Prevention survey of parents and guardians of more than 4,000 children ages 6 to 17 with special health care needs, researchers divided the children into three groups: those with ASD only; ASD with ID and/or DD; and just ID and/or DD.

Researchers found that children with ASD (with or without associated cognitive delays) were more likely to wander off than children with cognitive impairment but no ASD. Across all groups, wanderers were more likely to not realize when they are in danger, to have difficulty distinguishing between strangers and familiar people, to show sudden mood changes, to over-react to situations and people, to get angry quickly, and to panic in new situations or if change occurs.

"The kids who are most likely to wander are the kids who are least likely to respond appropriately to police or rescue personnel – potentially further jeopardizing their safety;" added Dr. Adesman. "First responders need to recognize that children or young adults with an autism spectrum disorder may over-react to some well-intentioned interventions and may be unresponsive to simple commands or questions"

In terms of prevention strategies, the researchers also found that caregivers of children with ASD and ID/DD were more likely than those in the other two groups to use fences, locks, alarms, electronic tracking devices or other measures to prevent wandering.

Caution About CDC Prevalence Estimates

At Autism, David Mandell and Luc Lecavalier raise a caution about CDC estimates of ASD prevalence.

In a “true” prevalence study, the information a child has in their clinical or educational record is irrelevant. Researchers identify some population or population-based sample and clinically assess individuals in person to determine the presence of ASD. The CDC did not rely on this in-person strategy, presumably because of the high costs. The result, however, is that the data they have collected may be uninterpretable as it relates to prevalence. Simply put, without direct assessments of children, we will not know the extent to which the CDC-determined “cases” include false positives, or the extent to which children who it was determined do not have autism are really false negatives. Social impairments and repetitive behaviors are present in many other childhood psychiatric disorders and developmental disabilities (Casey et al., 2013). The flaws in this methodology certainly could explain the great variation in prevalence, clinical presentation, and racial disparities by site.

Tracking ASD is no easy task. In addition to the changes in diagnostic criteria, ASD is clinically complex and has no established biomarkers (Lai et al., 2014). The CDC surveillance studies have resulted in rich datasets from which much important research has been published regarding disparities in diagnosis (Giarelli et al., 2010;Mandell et al., 2009), age of diagnosis (Shattuck et al., 2009), and clinical presentation (Maenner et al., 2013). We question, however, whether they should be used any longer to provide meaningful estimates of prevalence. In fact, we believe it is a mistake to do so.

TV News Reports on Autism

KPNX-TV in Phoenix reports on varieties of autism:



AP reports on the CDC study:



New Jersey public television interviews Walter Zahorodny, of UMDNJ, who says that the increase in prevalence probably is not just an artifact of greater awareness and changing diagnostic criteria.  He also expresses concern about DSM-5.

Watch Autism Investigator Sees Disorder Rates as Health Crisis on PBS. See more from WNJT.

Genetics and Autism

At The Huffington Post, Dr. Robert Klitzman writes that genetic testing may lead to discrimination:

The discovery of genes associated with autism raises these concerns anew. The Genetic Information Non-discrimination Act (GINA) is designed to try to prevent genetic discrimination in health care, but does not apply to life insurance, disability insurance or long-term care insurance. Currently, life insurers are free to request genetic information, and discriminate as a result.

Schools may learn of, or request genetic test results, and teachers may then discriminate against students with autism-associated mutations -- even if the mutation is not predictive (i.e., if some, but not all individuals with the mutation end up having symptoms). Parents may spend less time with a child found to have an autism-associated mutation than with other offspring.

Genetic information has been introduced into court rooms. The fact that a defendant in a crime has a mutation associated with autism may sway a court in judging guilt, causation, liability, or sentences.

Last week, Thomas Insel wrote:

Last week’s autism news was about prevalence. The CDC reported a 78 percent increase in autism prevalence since 2002. This week’s autism news is about genetics—three papers in Nature describe new genes associated with autism.
...
Is autism genetic or environmental? These new studies suggest it can be both. Genetics will not identify the environmental factors, but it may reveal some of the many syndromes within the autism spectrum (as in other neurodevelopmental disorders), it can define risk (as in other medical disorders), and it should yield clues to the biology of autism (revealing potential targets for new treatments). These three new papers on spontaneous mutations are an important milestone in a long journey. In parallel we need to find environmental factors, recognizing that there will be many causes for the autisms and many roads to find them.

Finally, an unavoidable insight from these new papers is that autism even when genetic may be spontaneous and not inherited in the sense that one or both parents carry some reduced form of the syndrome. Perhaps this insight will finally reduce the “blame the parents” legacy perpetuated for too long in the absence of scientific evidence.

Prevalence: The Local Angle

The DSM revision and the CDC report have inspired a number of local news stories about the increasing prevalance of autism.  Some examples:

In Salem, Oregon, The Statesman Journal reports:

In the Mid-Valley, Tim McGee, manager of mental-health services at the Easter Seals Children’s Therapy Center in West Salem, said he didn’t have hard numbers, but it’s easy to say the numbers of autism diagnoses have gone up. The center provides services such as speech and language therapy and occupational therapy.

“It used to be there was just a couple of us mental-health therapists who saw children on the spectrum. Now we have 18 therapists part-time and full-time who will work with children on the spectrum.”
...
Amanda Smith, special-education coordinator for students services in Salem-Keizer School District, said the district has seen a “dramatic” increase in the number of students locally with autism.

She said in 2006, 18 percent of the district’s special-education students had autism. By 2010, 51 percent of special-education students were identified as having autism. [emphasis added] The district has 6,000 students enrolled under the category of special education.

"We are feeling it,” Smith said. “We’re quite proud of how we serve these students. We offer a variety of programs and services, partly out of the growth of autism in our student population.”

The Oregon Department of Education reported Wednesday that autism remains one of the fastest-growing disabilities in Oregon schools. Their numbers have increased from 317 students with the diagnosis in 1990-91 to 2,650 students in 2000-01. This year, the number is 8,694. [emphasis added]

In Maine, The Morning Sentinel reports on Winslow Elementary School:

Amy Benham, a special education teacher who heads the autism program at the elementary school, said Wednesday she was aware of the latest estimate.

"One in 88," she said. "It's scary stuff."

Over the past six years, Benham has seen the population of autistic students rise from three to its current enrollment of 10. She said the school's program is prepared to meet the growing challenge through a mix of emerging technologies, hard work and collaboration with parents.

In North Dakota, The Grand Forks Herald reports:

The Grand Forks School District, too, has seen a rise in the number of children with autism, with 76 out of 6,823 enrolled students falling into that category, according to Tori Johnson, the district’s director of special education. That’s about one in 90.

“That number keeps going up,” she said.

They may go up some more this year. Altru Health System is setting up a series of free screenings for children 12 and younger. The goal is to identify children with this disorder as soon as possible, to maximize the effectiveness of treatment, according to Diane Gunderson, manager of Altru’s Rehab Outpatient Therapy Services.

A key issue with early detection is the resistance of parents fearful of what the truth may mean for their children.

“The embarrassing thing is when parents don’t want to realize their kid is different,” said Bob Concannon, whose son Bobby, now a Central High School student, was diagnosed with Asperger syndrome in kindergarten. Asperger is a disorder that falls within the autism spectrum.

The district deals with parents’ resistance by classifying some students as “non-categorical delay,” which includes children 10 and younger who struggle in school and may have learning and emotional disabilities. Some may have autism but the condition has not been diagnosed.

“It’s a way for us to serve them without identifying them specifically in a certain category,” Johnson said. [emphasis added]

Dismissing Autism

Amy Harmon writes at The New York Times:

THE report by the Centers for Disease Control and Prevention that one in 88 American children have an autism spectrum disorder has stoked a debate about why the condition’s prevalence continues to rise. The C.D.C. said it was possible that the increase could be entirely attributed to better detection by teachers and doctors, while holding out the possibility of unknown environmental factors.

But the report, released last month, also appears to be serving as a lightning rod for those who question the legitimacy of a diagnosis whose estimated prevalence has nearly doubled since 2007.

As one person commenting on The New York Times’s online article about it put it, parents “want an ‘out’ for why little Johnny is a little hard to control.” Or, as another skeptic posted on a different Web site, “Just like how all of a sudden everyone had A.D.H.D. in the ’90s, now everyone has autism.”

...

 According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite. Twenty percent of the 8-year-olds the agency’s reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis. The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis. In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate — 1 percent — in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.

Appropriations

Autism Speaks reports:

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

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

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

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

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

The Wandering Code

Wandering has been an issue in the autism community. From the Centers for Disease Control:

The ICD-9-CM code for wandering , effective October 1, 2011, is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations—making this an important safety issue for individuals affected and their families and caregivers. Children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders.

At the request of the Interagency Autism Coordinating Committee, a Safety Subcommittee was convened to address wandering and other safety issues for children and adults with ASDs. CDC, as a member of the Subcommittee, submitted a proposal for the wandering code to the ICD-9-CM Coordination and Maintenance Committee for consideration at the March 2011 meeting, which represented the final opportunity for additions/revisions to the ICD-9-CM until 2014. As part of the Coordination and Maintenance Committee’s usual procedures, proposals were open for public comment for 4 weeks, and revisions to the ICD-9-CM were announced online on June 10, taking effect October 1.

This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a subcode under the Alzheimer’s and dementia code and added as a condition to be noted in association with disorders classified elsewhere [V40.31]. The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering. Wandering should be coded if documented in the medical record by the provider (i.e., physician).

The wandering code is not linked to a specific diagnosis, nor is it part of the diagnostic codes used for autism or intellectual disabilities. The ICD-9-CM classifies behaviors and risk factors in addition to diseases and syndromes; as such, the wandering code is used in conjunction with other diagnostic and symptom or procedure codes.

CDC Study of Developmental Disabilities

Prevalence is in the news again. Nancy Shute writes at NPR:

Fifteen percent of American children have a developmental disability, including autism and ADHD, according to a new report from the federal Centers for Disease Control and Prevention.

That's an increase of almost 2 percentage points from 1997 to 2008, or almost 2 million kids. But that number may be squishier than it sounds.

The new figure comes from the National Health Interview Surveys, which ask parents if their children have ever been diagnosed with a variety of behavioral and developmental problems. That can include assessments by teachers or counselors, so the number is less than airtight. The number also could reflect increasing awareness of autism, and decreasing stigma.

The results were published online by the journal Pediatrics.

The question of how many children have autism has become a huge political issue, used to argue for more funding for early intervention, special ed classes, and insurance coverage. The numbers have also been used in battles over possible causes of autism.

Various studies have put the number of American children with autism as between 1 in 80 and 1 in 240. (The CDC has a good explainer on the varied numbers in the U.S., and in other countries.)

Bloomberg reports:

"Because the prevalence of some of these developmental disabilities is increasing, there's going to be an increased demand on the health system for these kind of specialized medical services," Sheree Boulet, the study author and an epidemiologist at the Atlanta-based CDC's National Center on Birth Defects and Developmental Disabilities, said in a May 20 telephone interview.

Today's study is the first to document the prevalence of developmental disabilities in U.S. children since 1994, Boulet said.

Autism and Wandering

As a previous post noted, CDC is considering a medical diagnosis for wandering. At The Wall Street Journal, Shirley Wang reports on the ensuing debate:

But the potential recommendation is garnering controversy from some autism advocates. The Autistic Self Advocacy Network and others are petitioning against the CDC’s stance because say that medicalizing the behavior could lead to increased and unnecessary restraint or seclusion of these individuals.

“The intention here is good,” says Ari Ne’eman, president of the Autistic Self Advocacy Network. “You’ve got people here who have wandered off and maybe get injured or even died. But they [the CDC] haven’t really thought through the unintended consequences.”

Having wandering as a diagnostic code will allow researchers to better gather information and characterize the problem and addresses families’ difficulties getting reimbursement for certain services, such as tracking devices, for instance, according to the CDC’s Coleen Boyle, acting director of the National Center on Birth Defects and Developmental Disabilities.

Health Blog Bonus: If you really want to get into the weeds about the debate, check out this transcript from a recent meeting of the Interagency Autism Coordinating Meeting (the wandering discussion begins on p. 11).

Wandering

Disability Scoop reports:

Disability advocates are divided over a Centers for Disease Control and Prevention proposal to add wandering to the menu of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions.

Under the proposal, which is up for public comment through April 1, wandering would be added to the CDC’s diagnostic coding system as a secondary classification that could be applied to individuals with developmental disabilities.

But whether or not a person’s tendency to wander away from home or school should be considered a medical issue is proving contentious.

Advocates for the proposal say that creating a diagnostic code for wandering would increase awareness and force schools, clinicians and the community at large to address the issue.

...

Other advocates worry, however, that labeling wandering as a medical issue is misguided. Ari Ne’eman, president of the Autistic Self Advocacy Network, argues that there is no research to suggest that wandering is medical in nature rather than a behavior that should be addressed through a social support system.

“For a lot of people with significant impairments, trying to leave a situation can be one of the only ways for them to communicate that they are facing abuse or facing an overwhelming situation. If this is put into a medical context then thought may not be given to why,” says Ne’eman whose group is working with The Arc, TASH, the National Disability Rights Network and others to oppose the CDC plan.

At the ASAN site, Ne'eman adds:

Labeling hundreds of thousands of children with a "wandering" diagnosis will increase restraint and seclusion in schools: One of the consistent messages from our community in last year's advocacy for federal legislation to stop restraint and seclusion in schools was that when schools plan to restrain students, they do restrain students - frequently with tragic results. By labeling hundreds of thousands of school children with disabilities with a diagnosis of "wandering", CDC will encourage districts to plan for the use of restraint for these students in Individualized Education Plans (IEPs) and school safety planning. Furthermore, by claiming that "wandering" is an unavoidable medical diagnosis instead of a behavioral response to specific circumstances, children with little to no communication needs may lose one of their last ways of making family members and educators aware of abusive or sensorily overwhelming environments: trying to leave a dangerous situation. Far from making children with disabilities safer, this proposal will enable abuse "in the name of treatment" and make it harder for non-speaking students to communicate problems to their families.

A release from Autism Speaks:

With increasing frequency, parents of children with autism spectrum disorder (ASD) report the terrible consequences that can occur when their children wander or unexpectedly run away. One mother described the recent death of her child who had wandered away from her home, despite efforts to lock doors and windows. Recognizing the seriousness and urgency of this problem, Autism Speaks, the world's largest autism science and advocacy organization, vigorously supports the proposed ICM-9-CM diagnostic code and asks the autism community to sign the petition found at http://www.change.org/naa. In addition, Autism Speaks has joined the Interagency Autism Coordinating Committee in the call for action for Health and Human Services (HHS) Secretary Kathleen Sebelius to study the causes of wandering and elopement behavior, and to develop ways of preventing its occurrence.

See the webpage for Autism Wandering Awareness Alerts Education (AWAARE)

Kim Wombles has a highly detailed post at Science 2.0

Vaccinations

Despite possible problems with whooping cough (see earlier post), the overall vaccination picture is largely unchanged. Katherine Hobson reports for the Wall Street Journal:

For the most part, toddlers are getting their recommended vaccinations, the CDC reported today.

A survey finds that for most routine vaccines — those against polio, measles/mumps/rubella, hepatitis B and chicken pox — coverage rates are close to or above the public health goal of 90% among children aged 19-35 months. And fewer than 1% of kids in that age group have received no vaccines at all.

(Here’s the vaccination schedule for kids up to age 6.)

As is customary, coverage rates for more recently recommended vaccines are lower. Coverage for the hepatitis B birth dose rose to 61% from 55% in the previous survey of kids in this age range, while coverage of the hepatitis A vaccine rose to 47% from 40% and coverage for the vaccine protecting against the pneumococcus bacterium held steady at 80%. Coverage for the rotavirus vaccine was 44%.

Data-lovers should dive directly into the CDC’s report; it has coverage rates broken out by state, racial or ethnic group and poverty status.