Do More Children Have Autism Now Than Before
This article was originally posted on The Conversation on 5 December, 2011.
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273% Increase in Autism and We Dont Know Why! Thursday, April 15, 1999, Los Angeles Times.
The rising prevalence of autism is a story destined to achieve headlines, take up column inches and even bump MasterChef from the top of the water-cooler gossip list. The headline above, which appeared in the influential Los Angeles Times, is perhaps the one that started off the frenzy of intrigue.
So, is there a rise in the number of children with autism? And if so, what is causing it?
The first question is by far the easier. Yes, there has most certainly been a steady rise in the incidence and prevalence of autism during the past half-a-century.
The finding is well-replicated and has been observed in every country that has an appropriate data source to tap.
The first survey was conducted in the 1960s and produced a prevalence estimate of one individual with autism in every 2,500 people or 0.04% of the population. When I first started my research in this area in the early 2000s, the oft-quoted figure was one in every 250 people .
In the last decade, studies have seemed to continually outdo each other with higher and higher prevalence figures, ranging from the 2005 Australian figure of one in every 160 people , to a recent South Korean study, which found an astonishingly high rate of one in every 38 people .
Conceptual change
Diagnostic substitution
Methodological differences
Who Are These Radical Scientists
Independent, decentralized biomedical research has come of age. Also sometimes called DIYbio, biohacking, or community biology, depending on whom you ask, open research is today a global movement with thousands of members, from scientists with advanced degrees to middle-grade students. Their motivations and interests vary across a wide spectrum, but transparency and accessibility are key to the ethos of the movement. Teams are agile, focused on shoestring-budget R&D, and aim to disrupt business as usual in the ivory towers of the scientific establishment.
Ethics oversight is critical to ensuring that research is conducted responsibly, even by biohackers.
Initiatives developed within the community, such as Open Insulin, which hopes to engineer processes for affordable, small-batch insulin production, “Slybera,” a provocative attempt to reverse engineer a $1 million dollar gene therapy, and the hundreds of projects posted on the collaboration platform Just One Giant Lab during the pandemic, all have one thing in common: to pursue testing in humans, they need an ethics oversight mechanism.
These groups, most of which operate collaboratively in community labs, homes, and online, recognize that some sort of oversight or guidance is usefuland that it’s the right thing to do.
Majority Of Autism Increase Due To Diagnostic Changes Finds New Study
Almost two thirds of the increase in autistic Danish children results from how autism is diagnosed and tracked, found a new study in JAMA Pediatrics, lending more support to the idea that the apparent rise in autism rates, or at least most of it, is unlikely to be “real.” That is, the increase is likely more about previously-unidentified autistic individuals getting an autism diagnosis than more individuals actually developing autism.
Although the term “autism” has been around for more than a century, it didn’t start taking on a meaning we would recognize today until the 1940s, and it remained linked to schizophrenia, a completely unrelated psychiatric disorder, until the 1960s. The definition has continued to expand and become more detailed, and thus autism prevalence has been adjusted accordingly over the years.
In Denmark in particular, the diagnostic criteria for autism expanded in 1994 to include a spectrum of disorders with a broader list of symptoms, thereby widening the definition of autism. Then in 1995, national data tracking began to include diagnoses made from outpatient patient visits rather than just diagnoses of those admitted to a healthcare facility. Since every Danish resident has a complete health record maintained by the Danish government, researchers can use this national health registry to study an entire population with lower likelihood of bias from those included or excluded in a study.
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Schools Need ‘more Resources’
Mrs Davison said that after her son’s diagnosis she put in place a home routine and altered his “visual” environment”.
While her children are now receiving extra educational support, she is still lobbying for greater resources.
“There are a lot of people who are not getting help in schools,” she said.
“The NHS and schools are under tremendous pressure but there needs to be more training and resources.
“If a teacher is working with a child with autism there needs to be training for them.”
Whats Driving The Rates Of Diagnosis
Commenting on the CDCs report, the president and CEO of Autism Speaks noted that the prevalence of 1 in 54 is a considerable change from the estimated prevalence rate of 1 in 166, back in 2005 when Autism Speaks was founded. She suggested that this is the result of increased and better screening, which lowers the age of diagnosis in minority populations and increases the chances of accessing therapy earlier in life.
While the CDC report was positively received, some autism advocates expressed concern that changing the criteria for autism may result in an overdiagnosis of autism spectrum disorder. Other experts counter that changing the criteria for autism means that the official diagnosis rates are catching up to the reality of autism occurring in more people and at an earlier age, allowing health care professionals to begin therapy sooner rather than later.
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Why Is Autism Increasing Dramatically
Let us start by reiterating some facts about autism.
- Multiple large-scale studies have established, with adequate proof, that vaccines do not cause autism.
- Autism does not develop due to bad parenting choices.
- Autistic spectrum disorders are not contagious.
Although the number of children diagnosed with autism has steadily increased over the last few years, this is not because more children develop autism now than before.
Experts cite the following reasons to explain the rise in autism cases in recent years.
ASD includes a broad spectrum of disorders with following symptoms, thus accommodating more kids under the title of autism.
Broadening Of Diagnostic Criteria
There is;no objective measure for;diagnosing ASD, unlike body weight and blood pressure. When applied in the;1966 study,;Scientific American explains, the definition of autism;had not yet made it into the widely used DSM. The definition;relied on Leo Kanner’s 1943 observations of “infantile autism,”;a term he coined to identify children who had previously been described as “as feeble-minded, retarded, moronic, idiotic or schizoid,” Spectrum News writes. Therefore, most diagnosed cases were severe.
Today’s diagnostic criteria;comes from the;the DSM-5,;which clinicians have continued to expand since 1980, and defines ASD as a developmental disorder that causes “Persistent deficits in social communication and social interaction across multiple contexts.” People with ASD also exhibit;”restricted, repetitive patterns of behavior or interests,” which can include reactions of extreme sensitivity or indifference to sensory inputs such as pain and loud noises, intense interests, and inflexibility in routine.
This change is significant enough that a literature review in the journal Research in Autism Spectrum Disorders in 2011 concluded, “Unless researchers are able to control for previously used diagnostic criteria, comparisons to previous prevalence estimates hold little information. Miller’s study did just that and concluded that;59% of children diagnosed “not autistic”;in a landmark study on autism from the 1980s would meet today’s criteria for ASD.
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Distinct But Related Conditions
Recent changes to the diagnostic criteria for autism have not weakened the definition of autism, some experts say. Instead, the changes have allowed health care professionals to better understand the underlying processes for distinct, but related, conditions that share symptoms with autism. This gives them a wider understanding of the many presentations of autism and other conditions that overlap.
Even as the rate of autism diagnoses has increased, more people are getting more accurate diagnoses earlier in life, meaning that more people who actually have autism are getting the necessary intervention and therapy that they need to control their disorder.
There Will Be An Even Larger Increase In 2020
The biannual announcement in 2018 of yet another increase in the prevalence of autism spectrum disorder has practically become a new rite of spring.
At the start of the millennium, the rate of ASD reported by the US Centers for Disease Control was 1 in 150 and this rate remained steady for 2002. Then, starting in 2004, there have been increases announced every two years: 1 in 125 in 2004, 1 in 110 in 2006, 1 in 88 in 2008, 1 in 68 in 2010 and 2012.
Last week, the data for 2014 were announced, with another increase to 1 in 59. It is noteworthy that the CDC prevalence data are based on 8-year-old children, so that the 2014 data are for children born in 2006.
What in the world is going on? Why do the reported rates of autism keep rising? And, will they keep rising despite new programs designed to detect and treat it at increasingly younger ages?
Although scientists have not yet discovered what causes autism, a number of proposed causes have been disproven. For example, the popularized view that MMR vaccines cause autism is no longer a tenable “cause” and the article originally presenting the vaccines cause autism discovery by Andrew Wakefield was withdrawn under scandalous circumstances.,
Despite this, the view that vaccines cause autism persists and some point to the rise in autism as a reason to fear vaccinations. And, of course, the rate of autism keeps increasing.
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Has Autism Prevalence Increased
President Donald Trump said;there has been a tremendous increase in autism in U.S. children. There has been a large;increase in the;reported cases of autism, but scientists dont know if this is due to;a broadening of the disorders;definition;and greater;efforts in;diagnosis or an actual increase in the number of individuals who have autism.
The Centers for Disease Control and Prevention;say;the increase in autism;diagnosis is likely due to a combination of these factors, and research suggests that a large portion, if not the majority of the reported increase,;is not due to an actual increase.
Since at least the 1990s, there have been substantial increases in the prevalence of reported cases of autism in children,;according to the CDC; from 3.4 per 1,000 in 1996 to;14.6 per 1,000;in 2012; or over a four-fold increase.
Individuals;with autism, or autism spectrum disorder, may have difficulties with social interaction and communication and highly focused interests and/or repetitive activities,;the CDC explains. The term spectrum in ASD means that each person can have a different set of symptoms, which;can range from mild to severe.
Trump made his claim on Feb. 14 at a meeting;with Education Secretary Betsy DeVos and parents and teachers from across the U.S. He;first asked a;principal of a Virginia special education center if shes seen a big increase in the autism with the children.
How Autism Rates Have Increased
If the Facebook post meant “increase in autism rates,”;a “30,000% increase in autism”;would require the rate of prevalence to be 300 times what it was 50 years ago. Autism rates have increased immensely in the last;half-century, though not at the rate;the post states.
In the 1960s, researchers estimated that 0.04% of European children, or roughly 1 in 2,500 children, had autism, according to HuffPost.;Currently,;1.85% of all American children, or 1 in 54,;are estimated to have autism, according to the CDC’s;Autism and Developmental Disabilities Monitoring Network. A;comparison of the 1966 estimate and the 2020 estimate;shows the prevalence estimate increased 45-fold; in that time period.
The widely publicized;increase in diagnoses has become a cause for concern among parents and public health experts.;However, it;does not mean that a child;today is 45 times more likely to truly have;ASD and its symptoms than a child 50 years ago was.;Many studies confirm the increase is due not just to true biology,;but rather broader diagnostic criteria;and ASD awareness and resources.;
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Autism Features May Be More Severe In Old Age
If you mention autism to most people, they will think about children, but it is a lifelong diagnosis. Children with autism grow up to be adults with autism. Little is known about how the conditions features change with age. This is because autism is a relatively new condition, first described in 1943 and not regularly identified until the 1970s. It is only now that those people first diagnosed are reaching older age that we can start to learn whether the condition changes over a lifetime.
There have been some suggestions that autism features may reduce as people get older. These reports, describing fewer difficulties with older age, are often from people with autism themselves and from their families. But how much evidence is there for this? Our latest research provides some answers, and also raises some new questions.
Working with the Autism Diagnostic Research Centre in Southampton, United Kingdom, we assessed 146 adults who were referred to the center seeking a diagnosis of autism between 2008 and 2015, and who consented to take part in the research. People were between 18 and 74 years old. A hundred of these adults were diagnosed with autism, and 46 people did not receive a diagnosis. This gave us an opportunity to explore the subtle differences between people who receive a diagnosis and those who dont, even though they may have some other similar difficulties.
The Outlook For Autism In 2021
While autistic individuals face difficulties that make various aspects of life more challenging, greater knowledge about the disorder has paved the way to better therapies. Autism research has allowed for more effective diagnostic processes as well as enhanced treatments and a better understanding of necessary accommodations for those with the disorder.
Effective interventions, therapies, and health care services greatly improve quality of life for those autism. Thanks to these advancements in our approach to autism treatment, there are more opportunities for autistic individuals than ever before.
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Autism: A True Increase Or Semantics
The jump in autism cases has spawned not only alarm but also debate about whether the number of children with autism could have increased that much in a relatively brief time.
“There’s a lot of controversy about that,” says Jeff Milunsky, MD, director of clinical genetics and associate director of the Center for Human Genetics at Boston University.
Two researchers who tracked the rate of autism in children born in the same area of England from 1992 to 1995 and then from 1996 to 1998 found that the rates were comparable, and concluded that the incidence of autism was stable. The study was published in the American Journal of Psychiatry in 2005.
But, Milunsky says, several studies have documented an increase in the U.S.
In a recent report in the journal Archives of Disease in Childhood, Milunsky and his colleagues point to several studies finding an increase in autism rates. In 2003, for instance, a large study conducted in Atlanta found that one in 166 to one in 250 children had autism, according to a report published in the Journal of the American Medical Association.
Another study conducted by the CDC in 14 states found an overall prevalence of one in 152, which Milunsky and others say is the generally accepted figure today.
“A kid labeled autistic today could have been labeled mentally retarded 10 years ago in the same school system,” Shattuck says. It wasn’t until 1992 that schools began to include autism as a special education classification.
When Did Autism First Become A Diagnosis
The term autism was first introduced in 1943 to describe children who exhibited socially withdrawn and isolated behaviors. Children who received a diagnosis of autism likely showed severe behaviors, and children with milder symptoms may have gone unnoticed.
Since 1943, the definition and diagnostic criteria of autism have evolved greatly.
- 1966: Autism prevalence was believed to be roughly 1 in 2,500 children.
- 1980: Autism spectrum disorder was first included in the Diagnostic and Statistical Manual of Mental Disorders .
- 1987: A new edition of the DSM expanded the diagnostic criteria so that 8 of 16 criteria had to be met in order to receive a diagnosis, rather than all 6 of the previously listed criteria.
- 1994: The DSM-IV added Asperger syndrome under the definition of ASD, broadening diagnostic criteria again.
- 2013: The DSM-5 combined autism, Asperger syndrome, and pervasive developmental disorder all under the label of autism.
The broadening of the definition and diagnostic criteria of autism has contributed to the steady increase in ASD diagnoses over the past decades. Combined with more awareness of the disorder, more people are receiving an autism diagnosis early in life and gaining access to essential services.
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Changes In Reporting Practices
The CDC’s report on autism statistics is based on health and school records for 8-year-old children who live in select counties across the United States. The researchers are part of the;Autism and Developmental Disabilities Monitoring Network, which the CDC set up in 2000 to estimate autism prevalence.
Clinicians;scanned the school records for signs of autism features, such as social problems or repetitive behaviors. They use data from 8-year-olds because most children are enrolled in school and have had routine health assessments by that age. However, the data is not based on whether children have been given an actual diagnosis of ASD.
Up until 1990, autism was not included in legislation aimed at guaranteeing an education to individuals with disabilities. In 1990, the Individuals with Disabilities Education Act added autism to its list of conditions covered under the act. The new law also added transition services and assistive technologies to its requirements. Autism had never been tracked as an educational statistic before 1990. Since 1990, the incidence of autism in schools has risen dramatically.
Another set of prevalence estimates published in Pediatrics in 2019 found that the prevalence of autism in the United States rose from 1 in 91 children in 2009 to 1 in 40 in 2017. The results were based on telephone or in-person interviews with the parents of 88,530 children aged 3 to 17 years, collected by the CDC as part of its;National Health Interview Survey.