Kristin Ro
BBC Future
Autism is better understood and diagnosed than ever before, leading to the mistaken conclusion that the number of cases has skyrocketed.
When it came to her son's autism diagnosis, Shannon Des Roches Rosa believes she was, in a way, lucky.
What autism spectrum disorder (ASD) looks like can vary enormously between individuals, just as it does between groups of people.
Symptoms in girls are often different of the symptoms that occur in boys.
Leo, as a little white boy, was part of a group with particularly well-established diagnostic criteria, and some were noticed by other people.
As a child, he rarely made eye contact and in kindergarten he did not respond to speech like other children.
He often exhibited compulsive behaviors, such as hand-flapping and chewing on clothes.
He could easily get stressed or become overly excited.
As a result, Leo's diagnosis in 2003, when he was two years old, was relatively straightforward.
But Rosa didn't get much guidance about what to do next.
“I felt very lost,” says Rosa, an editor and mother of three who lives in California.
"I was truly furious."
Like many other parents, she wanted, above all else, to know why her child had autism.
She saw on the internet that other parents were looking for the same answers.
Some believed that vaccines had harmed their children.
Numerous studies Studies conducted on thousands of children have consistently found no link between vaccinations and autism, and vaccinated children do not have a higher rate of autism than unvaccinated children.
But without a clearer understanding of why Leo was autistic, Rosa decided not to vaccinate her other children.
Over the years, Rosa realized she was wrong.
Not only did she change her stance on vaccination, she also launched a website Autism Guide for thinking people to help others.
"I sympathize with people who believe these things because I've been through it all."
"But now I know it was misinformation," she says.
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Rosa's story is an example of how, after being diagnosed with autism, some families are just looking for clear answers.
In early 2025, Robert F. Kennedy Jr., the US Secretary of Health and Human Services, promised a “massive” research effort by hundreds of scientists to address what he called the "autism" epidemic before September of the same year.
But decades of autism research have shown that these causes are complex and largely genetic.
The biggest reason for the increase in autism diagnoses is most likely not these causes, but changing the way examinations are performed and diagnoses are made this condition, experts say.
Autism is neurodevelopmental disorder which often encompasses differences in thought patterns, processing sensory sensations, communication and social interactions.
The prevalence of autism is estimated to be approximately one to three percent in the countries where it has been studied, although there is not enough data in many low- and middle-income countries.
In countries that have tracked this data for decades, there has been a steady increase in autism diagnoses. since the mid-20th century.
Based on health and education records, from 2000 to 2022, the prevalence of autism in the US increased from 1-in-150 vs. 1-in-31.
This presence is also increased in Australia, Taiwan and other countries.
“It can seem alarming to people who don’t know the context and the statistics,” says Zoe Gross, director of the Autism Self-Advocacy Network (ASAN), a U.S. nonprofit organization run by autistic people.
It's not necessarily that the number of autism cases is increasing, Gross points out.
More precisely, the number of diagnoses is increasing.
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As a recognized separate condition, autism is relatively new.
It was not included. in the Diagnostic and Statistical Manual of Mental Disorders (DSM) - a book detailing the symptoms and recommended treatments for hundreds of mental conditions up until 1980.
Children with ASD have often been previously misdiagnosed with conditions such as schizophrenia or they never even received a diagnosis, says Gross.
But even this recognition proved to be very narrow.
1980 criteria for example, included first symptoms before 30 months of age, lack of reactions to other people, and delayed language development.
All of the above criteria had to be met to receive a diagnosis.
Forty-five years later, the diagnostic criteria for autism have been expanded.
A major change occurred in 2013 when, for the first time, the DSM introduced subcategories such as Asperger's syndrome. under the umbrella of autism spectrum disorder (ASD)).
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People who would not have previously been diagnosed with the disease would now be more likely to meet the criteria for the disease.
Diagnostic gap has also decreased in groups that have been historically neglected, such as racial minorities in the USA.
Even today, diagnosis rates can vary enormously depending on the area in which an individual lives.
Autism spectrum disorder (ASD) has been found in less than one percent of eight-year-olds in Texas in April 2025, but more than five in California, which is most likely reflects differences in approach to assessment.
Autism diagnoses can also help in getting help such as state benefits or more time to complete the exam.
These are some potential reasons to seek a diagnosis that would not necessarily have been available in past decades.
Meanwhile, autism screenings have become more sensitive, and many children are being screened and identified. earlier than in previous years.
It is believed that it is also gradual reduction of stigma led to more autism assessments in children and adults, while both members of the public and healthcare workers have become much more aware of the large number of manifestations of ASD.
People are also better understanding the different ways autism might be visible, including “people who might not have been registered in previous years, and who may have less intense needs for help,” Gross says.
This is true for many parts of the world.
Yun-Ju Koh, principal investigator at the Korea Institute for Child Social Development, says that in that country, many parents are learning about ASD through social media and are coming to her clinic earlier than they used to.
All of this means fewer hidden cases of autism.
"Autistic people have always been around, but we never had a good sense of how many there actually were," says Rosa.
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In genes
Autism is highly heritable, meaning it can be passed down genetic factors, but it is also very complex, says Sven Sandin, a statistician and psychiatric epidemiologist at the Karolinska Institute in Stockholm.
ASD is about 80 percent hereditary, his research conducted in five high-income countries showed.
This means that about 80 percent of the differences in ASD risk come from genetic variation.
Genetics are actually behind most cases of ASD.
His research in Sweden showed that especially hereditary among boys: 87 percent for boys and 75,7 percent for girls.
As with many aspects of autism epidemiology, it's not entirely clear why, says Sandin, who also works at the Icahn School of Medicine at Mount Sinai Hospital in New York City.
But what seems clear from his work, and what it belongs to one of his Swedish studies, is that autism runs in families.
Children whose siblings had autism were 10 times more likely to have it themselves, compared to those whose siblings did not.
If a half-brother or half-sister had autism, the children were three times more likely to have the condition themselves.
Studies on identical twins have shown that if one has ASD, There is a 65 to 90 percent chance that the other twin will also have it..
But knowing that autism is hereditary doesn't mean that only one gene is responsible in everyone who has it.
Identified more than 100 genes which have some connection with the diagnosis of autism, although they are not necessarily related to autism alone and are often related to other conditions.
It is believed that in some people, thousands of genes are involved in the process.
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The role of the environment
But genetics is not the whole story.
"The general belief is that there are a huge number of different genes and a very complex genetic architecture and probably with environmental influences they drive autism," says Sandin.
To try to find the missing pieces of the puzzle, researchers have studied a range of behavioral and environmental risk factors.
Some explanations have been refuted, such as the theory of "mother's refrigerator" - that emotionally cold mothers contribute to autism in their children.
Sandin is also skeptical about the idea that certain antidepressants used by parents associated with risk of autism in children, although there does seem to be a connection with psychiatric disorders in parents.
There also appears to be strong, albeit mixed, evidence that an increased likelihood of autism is associated with older parental age.
It is possible that this is due to the higher probability from new (spontaneous) mutations in the sperm of older fathers.
Increased risk of mutations could also help explain the association between premature birth and autism.
Spontaneous mutations can increase the chances of premature birth.
Premature births are also linked to social factors such as low income and food shortages, which may partly explain the sharp rise in autism diagnoses. in minority children in the US.
In addition, there are suggestions that environmental exposures, from pesticides to air pollution, they can play a certain role.
Some studies have also found a link between birth spacing and maternal health, including: diabetes, smoking i obesity.
But it has also proven difficult to disentangle these factors.
It's not clear whether a mother's body mass index directly influences autism, for example, or whether older mothers simply tend to have higher BMIs, Sandin said, adding that it could be related. with common environmental conditions rather than having a direct connection.
It is possible that at least some of these risk factors, although minor players individually, may be significant when combined.
But overall, experts agree that most environmental factors need to be further studied before conclusions are drawn.
What is consistently turns it off any connection between vaccines, even certain ones ingredients some of which also contain ASD.
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This does not satisfy many, Gross points out.
"Many people look for simple explanations, especially when autism is stigmatized, and when they have been told many negative things about their child's disability."
"They want not only an explanation but also a culprit," he adds.
The resulting vacuum has created space for the spread of simplistic ideas, even those for which there is no evidence, and which have been repeatedly refuted.
In the USA, for example, where current measles epidemic has claimed many lives, children whose older siblings have ASD are less likely to be vaccinated against measles, mumps, and rubella themselves.
Partially and because of the long-debunked link between autism and vaccination.
One reason it's common to be concerned about the rise in autism diagnoses is that societies generally haven't built enough support systems to accompany diagnoses, Gross says.
A way to make an autism diagnosis less scary would be to improve support, she says.
Rosa agrees with that.
The real crisis, she says, is not a crisis of autism, but of care and support, which was not enough for Leo, now 24 years old, a lover of hiking and pizza.
And while Rosa continues to search for the best ways to support her son, researchers will continue to try to understand the scientific background of autism.
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