Autism prevalence increases: 1 in 59 US children

(THIS ARTICLE IS COURTESY OF CNN) (INFORMATION GLEANED MOSTLY FROM THE CDC)

 

Autism prevalence increases: 1 in 59 US children

09 Autism research Duke

Story highlights

  • The CDC estimate is based on calculations on 11 communities across the nation
  • Disparity gaps between white children and both black and Hispanic children are closing

(CNN)One in 59 US children has autism, according to a new report from the US Centers for Disease Control and Prevention.

The new estimate is a prevalence rate of 1.7%, up from one in every 68 children (1.5%) in the 2016 report, which was based on data from 2012. The new figure was derived from 2014 estimates for 8-year-olds diagnosed with an autism spectrum disorder in 11 communities across the nation.
The new estimate represents a 15% increase from two years prior and a 150% increase since 2000.
Autism spectrum disorder, a developmental disability, is characterized by problems with communication and social interaction with accompanying repetitive behavior patterns.
“Parents know their child best,” said Daisy Christensen, co-author of the new report and surveillance team lead in the developmental disabilities branch of the CDC’s National Center on Birth Defects and Developmental Disabilities. “We want to encourage parents to be aware of their child’s development, to be aware of the milestones that children achieve.”
By tracking milestones, parents can report any concerns to a health care provider, who will refer the child for a comprehensive development evaluation “so that any delays or impairments can be identified and that child can be connected with services,” Christensen said.

‘Diverse communities’

The CDC launched the Autism and Developmental Disabilities Monitoring Network in 2000 to collect data that would provide estimates of the prevalence of autism spectrum disorder and other developmental disabilities. The agency laid the groundwork for the network in 1996, when it developed a methodology for estimating autism prevalence using information from children’s health and education records, Christensen said.
“So since 2000, we’ve funded between six and 14 sites to use the CDC established methodology to estimate the prevalence and characteristics of autism spectrum disorder in diverse communities throughout the US,” she said.
The new estimated rate of autism in the United States is based on data collected from 11 communities in Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin. It is not nationally representative, Christensen noted.
“There were more than 300,000 children living in these communities — about 8% of all 8-year old children living in the US,” she said. “And these are diverse communities so that we can look at autism prevalence and characteristics in a number of different groups defined by race/ethnicity or by socioeconomic status.”
Though estimates of autism varied widely among the 11 communities, five reported similar estimates of up to 1.4%. The New Jersey community estimated the highest prevalence of autism, at 2.9%.
Overall, fewer than half of the children identified with autism had received their first diagnosis by the time they were 4 years old, the new CDC report finds. Concerns about development were noted in the health records of 85% of children with autism by age 3, but only 42% received a developmental evaluation by that age.
Some of the factors explaining variations across the network include “differences in policies that affect access to services, differences in how children are screened and evaluated and diagnosed in those communities; some sites are almost exclusively in urban areas, where you might expect to have more concentrated and more specialized services for evaluating and serving children with developmental disabilities,” Christensen said.

A broader definition of autism

Also, the definition of autism has changed through the decades. “Over the ’80s and ’90s, the diagnostic criteria expanded to include more children,” Christensen said, “so I think that’s definitely a possibility for the increase that we’ve seen.”
In the past, more than half of children identified with autism also had intellectual disability, and now it’s about a third, she said. “And that’s really consistent with identifying children who are perhaps at the milder end of the spectrum.”
The new government data can’t tell us exactly why the increase has occurred, Christensen said. “One of the main things we note this year is that the difference in prevalence between white and black children and between white and Hispanic children has decreased.”
In 2012, for example, the prevalence was about 20% higher in white children than in black children, and now it’s about 10% higher; it was 50% higher in white children compared with Hispanic children, and now it is 20% higher.
“We don’t have any biological reason to think that autism prevalence would vary by race/ethnicity,” Christensen said, so the large gaps from the past suggest that black and Hispanic children were less likely to be identified than white children. They also were not getting the necessary services to develop to their fullest potential.
In New Jersey, Minnesota and Maryland, there was no difference at all between black and white children.
Thomas Frazier, chief science officer for the advocacy organization Autism Speaks, said the new government report is “really important because it’s a significant increase. It’s a meaningful increase.”

The sooner, the better

Frazier agreed that diagnostic changes and increasing awareness have contributed to the increase in autism diagnoses. “For example, people who used to be only diagnosed with mental retardation or an intellectual disability are now also getting an autism diagnosis,” he said.
“We’re waiting longer to have kids, and older parents are more likely to have a child with autism, and premature babies are living at rates that they didn’t use to live at, so those babies are at risk for autism,” he said, adding that there are probably other unknown risk factors.
He noted that the male to female ratio decreased in the new report. “It was 4.5 boys for every girl, and now it’s 4 boys to every girl. The decrease in those disparity gaps is a good thing,” Frazier said. “We have data to suggest that the ratio is probably closer to 2- or 3-to-1 as opposed to 4-to-1.”
Ultimately, Frazier believes that more research is needed, “because without that, we aren’t going to understand why autism has increased so dramatically over the decades. We’ve also got to push on services, because look at the numbers.”
The necessary services include not only educational but adult transition services, he said: “We need to do more work to get kids identified earlier, we should be identifying kids closer to age 2.”
Though rates are going up, in some ways, it is actually “good news,” said Dr. Stuart Shapira, associate director for science and chief medical officer in the National Center on Birth Defects and Developmental Disabilities. “Communities are doing a better job of identifying children and connecting them to services.
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“The soonest that a child can get into services, the better the outcomes for the child and more likely to achieve their developmental potential,” he noted.
Shapira cited the CDC’s Learn the Signs. Act Earlyprogram, which offers “free resources for parents to monitor their child’s developmental milestones.” Last year, the CDC also produced the Milestone Tracker mobile app “for smartphones and tablets that parents can use to monitor their child’s development in fun and interactive ways.”

 

 

Scientists getting closer to developing blood and urine tests for autism

(THIS ARTICLE IS COURTESY OF CNN)

 

UK and Italian scientists are getting closer to developing blood and urine tests for autism, which could lead to earlier diagnosis and treatment of the condition, a new study suggests.

The tests look for damage to certain proteins, shown to be higher in children with autism spectrum disorders.
The team from the University of Warwick and the University of Bologna tested 38 children with autism and 31 children without, ages 5 to 12.
They looked for differences in samples of blood and urine between the two groups. When looking at plasma in the blood, the children with autism had greater protein damage, resulting in higher levels of an oxidation marker known as ditryosine and sugar-modified compounds called advanced glycation end-products.
But experts caution that the tests are far from becoming available clinically and that more research needs to be done.
“We have found that the power of measuring damaged proteins to the brain may be a cause for a development of autism,” said Paul Thornalley, a professor in systems biology at the University of Warwick, who co-led the study.
Previous studies have made a connection to autism from proteins that were not damaged, unlike this study, which looks at damaged proteins in the brain, Thornalley added.
The study, published Monday in the journal Molecular Autism, was small and requires further research on a larger number of children to determine whether the results are conclusive.
“This (study) is weakened by a small sample size, possible overfitting of data and a lack of comparison groups,” said James Cusack, director of science at Austistica, a UK research charity that aims to understand the causes of autism and improve diagnosis. “This study does not tell us how effectively this measure can differentiate between autism and other neurodevelopmental or mental health conditions such as ADHD and anxiety.”
Autism is a developmental disorder that mainly affects social interaction, causing a wide spectrum of behavioral problems, including hyperactivity, anxiety or speech disturbances.
An estimated 30% of cases have been found to have genetic causes. The remaining 70% are thought to be caused by a combination of environmental factors, mutations and genetics, according to the study.
Currently, if a child is suspected of having autism, doctors carry out a series of behavioral tests, which take time and may not not give an accurate diagnosis. A biological test, like a blood test, would provide a faster and more definitive diagnosis.
In the US, more than 3.5 million people live with autism spectrum disorders, according to the Autism Society, and this limits 35% of young adults with the disorder from having a job or continuing their education after high school.
In the UK, there are 700,000 children and adults on the autism spectrum, according to the National Austistic Society.
A blood test for the disorder has been much sought-after by researchers around the world but has remained elusive.
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Thornalley explained future research would be looking to identify autism spectrum disorders in children from as young as 2.
Naila Rabbaini, researcher of experimental systems biology and co-lead on the study, said that with further testing of larger number of children at younger ages, the team may be able to find new causes of autism and assess whether treatments are working.
“This is a promising area; however, this is a very long way indeed from a ‘test for autism,’ ” said Dr. Max Davie, spokesman for the Royal College of Paediatrics and Child Health. “It is important that it is not adopted with too much enthusiasm. If applied to a large population, it will produce large number of false positives, causing huge worry and potential harm to children and families.”

Autism Rates Have Stabilized in U.S. Children

(THIS ARTICLE IS COURTESY OF TIME NEWS)

 

Getty Images

By AMANDA MACMILLAN

January 2, 2018
TIME Health
For more, visit TIME Health.

Rates of autism spectrum disorder among children in the U.S. remained stable from 2014 to 2016, according to new research—a change from previous studies that found steady increases over the past two decades.

The new research letter, published in JAMA, looked at survey responses from a nationally representative sample of more than 30,000 children, ages 3 to 17, and their families. From 2014 to 2016, adults in each household were asked if a doctor had ever told them that their child had autism, Asperger’s disorder, pervasive developmental disorder or autism spectrum disorder. Data from the study was then adjusted to account for differences in people’s age, gender and ethnicity.

The researchers found that in 2014, 2.24% of participating children were reported to have an autism spectrum disorder. That number rose only slightly in 2015 and 2016, to 2.41% and 2.58%, respectively—an increase that was not statistically significant.

Autism rates did vary by sub-group. Over the three-year period, 3.54% of boys were reported to have an autism spectrum disorder, compared to 1.22% of girls. Prevalence was 1.78% in Hispanic children, 2.36% in black children and 2.71% in white children.

The overall estimate for autism prevalence among children in the analysis—2.4%—is higher than another recent estimate, from the Autism and Developmental Disabilities Monitoring (ADDM) Network, of 1.46%. The discrepancy may be explained by differences in study design, the authors note in their report. For example, the new study asked parents if their child has received a diagnosis, while the previous study looked at education and health-care evaluations.

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The current study did not gather information about possible causes for autism and how those factors may (or may not) have changed over time. And, although the survey the researchers used has been going on since the 1960s, the question about autism was changed in 2014—so it cannot be used to estimate change in autism prevalence rates during earlier years.

Several large studies have suggested that autism rates have risen steadily in the last 20 years, but this new report suggests that rates may be leveling off. The ADDM Network’s estimated rates also plateaued between 2010 and 2012 (after increasing roughly 123% between 2002 and 2010), but then jumped 30% from 2012 to 2014.

Changes in diagnostic criteria, an increase in public awareness and more children being referred to physicians have all been suggested as possible causes for the previously documented rise in autism rates, the authors wrote in their report. So have potential changes in genetic and environmental risk factors. “Continued monitoring of the prevalence and investigation of changes in risk factors are warranted,” they concluded.

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IDF Soldiers Work Within Program That Helps Autistic Children

(THIS ARTICLE IS COURTESY OF THE TIMES OF ISRAEL)

 

Soldiers, parents of autistic children, high school students and random volunteers joined forces in Tel Aviv to make life easier for people with autism and their caregivers.

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Some 85 people took part in a 24-hour hackathon last month organized by OFEK, the computing unit of the IAF. Held jointly with ALUT, the Israel Society for Autistic Children, people worked in groups to put innovation in the service of disability by creating an app or computer program for the benefit of the children.

“Until recently, the only treatment available for autistic children and adults in Israel was admission into psychiatric hospital,” said Arkady Gurevich, chairman of OFEK Alumni Association. “Even the necessary equipment or tools required to diagnose a patient as autistic are minimal or of poor quality due to costly-budget issues.”

The project also helped OFEK soldiers meet the three goals they abide by: “networking, working better together and contributing to society,” said Gurevich, who was in charge of ensuring the smooth running of the collaboration. “This is important for our soldiers as it allows us to put our knowledge into practice, all while continuing to learn at the same time, creating a lasting legacy of productive work.”

Gurevich explained that the hackathon’s 24-hour time frame “provides an indication of how quickly we can respond to a need through technology.”

Participating groups prepare for the start of the hackathon. (Dror Sitahkol)

Participating groups prepare for the start of the hackathon. (Dror Sitahkol)

Prior to the hackathon, ALUT organized several meetings in which therapists, specialists and psychologists educated the soldiers and volunteers about autism and the challenges of both the children and their parents. They introduced some 100 different challenges in total, out of which ALUT chose 13.

OFEK then divided all the participants into 13 different groups with each group tackling one task.

The challenges

The blank facial expression is a typical issue for autistic people who do not know how to show facial expressions when they are happy, mad or sad. The condition makes communication between autistic individuals and their caregivers extremely difficult as the facial expressions are impossible to read.

Participants try out some technology developed at the hackathon. (Dror Sitahkol)

Participants try out some technology developed at the hackathon. (Dror Sitahkol)

One group tackled this challenge by creating an app that aims to teach the autistic person how to express their feelings.

The app that was developed displays the an image of a smiling face and asks the person to imitate it. Then the app does the same for other feelings. The app monitors the expressions of the users to give them feedback if they are doing it correctly or not.

Navigation is another issue that burdens both people with autism and their caregivers. It is common for autistic persons going out in a group to want to wander off on their own. The navigation tools and apps currently available are complex to use due to an overload of information, and maps that are complicated to read.

One group aimed at simplifying the current tools by creating a GPS built-in wearable device for the autistic person. The device would then be linked to an app so that if one leaves the group’s perimeters, the instructor would get an immediate update on where the person is.

Another group tackled the inability of autistic individuals to maintain eye-contact. Autistic people have difficulty looking at one specific thing at the time. Quantifying the lack of eye contact would help doctors measure the severity of the autism, so the soldiers came up with a way to help doctors measure eye contact in an objective way — they created a camera-like device to monitor the patients’ eye contact.

This project with ALUT “is the first of many to come, as OFEK intends on using its soldiers’ powerful skills and knowledge to help one non-profit organization a year,” Gurevich said. “While the project took place in the form of a competition, the real prize was to bring attention to the autistic community of Israel and eventually develop what could be life changing technology for many.”

Forgive us, we did not know. Forgive him, he does not understand (JCC Bomb Hoaxer)

The parents of the JCC bomb hoaxer accused of a vast, relentless two-year campaign of vicious threats and internet crime do their best to explain the inexplicable

Source: Forgive us, we did not know. Forgive him, he does not understand

Why the Supreme Court special education case about a boy with autism is so sickening

(THIS ARTICLE IS COURTESY OF  THE WASHINGTON POST)

Why the Supreme Court special education case about a boy with autism is so sickening

January 12 at 3:42 PM

There is something sickening about a case the Supreme Court just heard about a boy with autism and what level of public education he — and other students with disabilities — deserve.

Here’s some background: The Individuals with Disabilities Education Act is a federal law requiring public schools to provide children with disabilities a “free appropriate public education.” Students in special education get “individualized education programs, or IEPs, or blueprints that spell out supports and goals for each child. The Supreme Court ruled decades ago that IEPs must lay out plans that provide some educational benefit, but it didn’t set a benefit standard, and lower courts have been divided over what it should be. Some have required a substantial — or “meaningful” educational benefit — while others require only a de minimis — or anywhere above trivial — educational benefit.

Now the Supreme Court — which held a hearing in the case Wednesday — is being asked to decide on a standard, which is essentially the same as deciding whether the United States really cares about providing all students a free and appropriate public education, and whether it is wholly committed to helping families that have children with disabilities.

These are the facts of the court case, which could affect millions of children with disabilities and the public schools they attend:

A boy named Drew was diagnosed with autism at age 2, affecting his cognitive functioning, language and reading skills, and his social and adaptive abilities. From preschool through fourth grade, he received special education services in schools in Colorado’s Douglas County district.

By fourth grade, his parents saw his behavior get increasingly worse. The 10th Circuit Court of Appeals, which got involved in this case, said fourth grade was “especially rocky.”

Drew exhibited multiple behaviors that inhibited his ability to access learning in the classroom. In the past, he has climbed over furniture and other students, hit things, screamed, ran away from school, and twice removed his clothing and gone to the bathroom on the floor of the classroom.

Drew’s parents said that although they saw some progress in Drew, it was minimal, so they pulled him from the public school system and placed him in a private school that used interventions that experts consider effective for many children with autism. Reports about his progress under an intervention called ABA were very positive, with “great” behavioral gains that led to an ability to pay more attention in class, complete math and verbal skills work  and interact with peers and teachers.

Under the federal law called the Individuals With Disabilities Education Act (IDEA), parents can seek tuition reimbursement from the school district and can win if several conditions are met. One of them is that their son wasn’t getting enough “educational benefit” from the public schools. Drew’s parents applied for reimbursement — arguing that the public district had not provided him with a free and appropriate public education. They were denied by the school system. That started a trek through the courts, leading to the Supreme Court, which is reviewing a 2015 decision by the 10th Circuit, which upheld the school system’s decision, using a very low standard for educational progress.

What is enough educational benefit? That’s what the Supreme Court is being asked to consider, and that, when you think about it, is where this case gets ugly.

Remember that we are talking about young people with disabilities — some of them so severe that a child might, for example, have the intellectual capacity of a 6-month-old, or have frequent disruptive seizures  — and their families, some of whom have daily burdens that others can’t begin to imagine.

So is minimal educational benefit enough? You may not know exactly what “minimal” is, buy by definition, you wouldn’t want that to be the standard for your child. Is “some” benefit — which courts have said means progress that is barely above trivial — enough for your child — or somebody else’s? Or do students with disabilities deserve a standard requiring “meaningful” benefit and if so, what does “meaningful” mean? Should the standard be “appropriate”? During the Wednesday hearing, nine different standards were mentioned in the proceedings within a half-hour period.

Should children with any disability be at the mercy of a standard that depends on the federal appellate jurisdiction in which his school district is located?

The Supreme Court justices on Wednesday seemed to be dissatisfied with the 10th Circuit’s ruling that public schools can meet IDEA requirements by providing an education to students with disabilities that is more than trivial, but there was no seeming direction indicated about what standard they do think makes sense.

It is understandable that school districts have a difficult time trying to appropriately implement IDEA, not only because of the nebulous standards but also because it has never been fully funded. According to the New America Foundation’s EdCentral (footnotes removed):

In the IDEA legislation, Congress set a maximum target for the federal contribution to special education spending equal to 40 percent of the estimated excess cost of educating children with disabilities. Thus, if the program were “fully funded,” the states would receive their maximum grants, calculated at 40 percent of the national average per pupil expenditure (APPE) times the number of children with disabilities served in the school year 2004-2005, adjusted for population changes. Under the act, the count of children with disabilities cannot exceed 12 percent of the state’s total school population.

For FY 2014, IDEA federal funding covered 16 percent of the estimated excess cost of educating children with disabilities, less than in FY 2008 when federal funding covered 17 percent of the cost and well below FY 2009 when additional funding through the American Recovery and Reinvestment Act covered 33 percent of the cost. IDEA Part B “full funding” for FY 2014 would have amounted to approximately $28.65 billion, or roughly $17.17 billion more than was actually appropriated. The shortfall in IDEA funding has been assumed by the states and local school districts.

Yet there is something chilling about some of the debate about this issue. The debate is being played out in legalese — there’s  lots of talk about “procedure” — in the world of words rather than people. As Supreme Court Justice Samuel A. Alito Jr. said in Wednesday’s hearing: “What is frustrating about this case and this statute is we have a blizzard of words.”

A blizzard of words that seem to fly right over the actual people being affected. As Gary Mayerson, a civil rights lawyer and board member of Autism Speaks, an advocacy organization, said in this article by my colleague Emma Brown: “I can’t even believe that this is really a question for the court to wrestle with.”

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