Not so long ago, autism was considered rare, but now it is very common: The diagnosis of autism in children has increased almost. five times across the United States in the past few decades, from one in every 150 8-year-olds in 2000 to one in 31 in 2022. Screenings in adults have also increased. in a hurry in recent years.
According to many researchersmuch of this growth is due to increased recognition of milder forms of autism—cases in which people may have normal to high IQ and normal verbal abilities but struggle with social interactions or have severe disabilities. In contrast, severe autism is generally associated with low IQ, little or no speech, and the likelihood that the person will need some form of care or supervision for the rest of their lives. A a study published last year found that the prevalence of autism with “mild, borderline, or no significant changes” increased from 2000 to 2016, but that the frequency of cases involving “moderate to severe” decreased slightly. And the likelihood that a person with autism also has an intellectual disability has fallen dramatically since the 1980s, from about 70 percent to about 30 percent.
I spoke with five researchers and clinicians who say they are concerned about the possibility that too many people are being diagnosed with mental illness. They say that some people who have received this diagnosis instead may have anxiety or another mental illness. Others may not have any identifiable mental health conditions, and may be mistaking their usual social struggles as a sign that they have a problem. “Some of those people are autistic,” Catherine Lord, a clinical psychologist at UCLA who specializes in autism, told me. But some people think, “Maybe this is the answer to why I feel different or unhappy,” it could be wrong, he said.” This tendency toward overdiagnosis, these experts say, can hurt both people misclassified as mildly autistic and those with more severe forms of autism.
To be sure, researchers do not know what the expected average number of autism cases in a given population should be. Generally, to be considered autistic, a person must have demonstrated social problems and repetitive behaviors—such as hand-flapping and spinning—before the age of 5. But no brain scan or blood test can diagnose the condition, so doctors must rely on the person’s own account—or their parent’s account—of their challenges. Soon read found that nearly half of the children who had been given a diagnosis of autism at one clinic did not meet the criteria for autism when they were reevaluated at another clinic. The diagnosis may be specifically waived for children with visual or hearing impairments or other disabilities. In adults, the diagnosis of autism is incorrect about 20 percent of the time, even with rigorous tests, Lord said.
Some of the inconsistencies in the investigation can be explained by the limitations of the health care system: Well, psychiatrists and psychologists will focus on interviews with teachers and parents of the patient-or, in the case of adults, their relatives and friends. But clinicians may not have time to devote much attention to their patients, and they don’t want to miss any cases. The Lord said that many specialists therefore diagnose patients based on symptoms or the patient’s history. Diagnostic criteria, too, are somewhat vague: Bad eye contact, for example, can be a sign of autism, but it can also be a sign of schizophrenia, ADHD, social anxiety, or depression, Eric Fombonne, professor emeritus of psychology at Oregon Health & Science University, told me. The Diagnostic and Statistical Manual of Mental Disorders states that autism causes “impairment,” but what constitutes impairment is open to interpretation.
Some of the experts I spoke to also told me that more people seem to be seeking mental health diagnoses now than they did in the past. Having an accurate label for social challenges or feelings of isolation can feel freeing and calming. Unlike, say, those with schizophrenia or bipolar disorder, the diagnosis of autism has been desirable for some people, Uta Frith, professor of psychology emeritus at the University of London London who. he was one of the first people to study severe autism, he told me. He said there has been a “significant increase in diagnostic requirements.” According to Fombonne, autism “has become chic.” Lord said that he, too, has seen more patients asking if they should be diagnosed with autism, and many of them have milder symptoms. The Lord gave an example of the type of person he sees who has a high IQ, may be depressed or anxious, and questions their sexuality or gender. “So one is trying to realize oneself,” he said. “They may be somewhat socially anxious, they often have friends, but they feel like something is missing.”
Content about autism on social media may encourage some people to seek this diagnosis. Influencers have flooded TikTok and Instagram with videos explaining the “hidden” symptoms of mental illness, such as have a lot of fun something you are interested in and look up restaurant menu before going. These videos suggest that you may have autism if you information subtle communication styles, dislike small talk (even if you’re good at it), or go inside the house when it’s very hot outside. Social media also has to be raised the idea that many autistic people are not diagnosed until later in life because they “hide,” or hide their autistic traits. In his book Age of RecognitionBritish neurologist Suzanne O’Sullivan describes a woman named Poppy who was diagnosed with autism in her early 20s. O’Sullivan writes that watching TikTok crystallized Poppy’s feelings that she might have autism. “I wanted to know if there were other people like me out there, so I went on TikTok and found out there was a poll,” Poppy said, according to O’Sullivan.
Perhaps not surprisingly, one study found that just about a quarter of the most popular videos about autism on TikTok were correct. However, a correct A diagnosis of mild autism may be helpful. Donna Henderson, a psychologist in Maryland who specializes in mild forms of autism, told me, “There is no greater gift we can give someone than knowing who they are.” Most of his customers are not swayed by social media, he said. “The people I see in my office are not 12-year-olds who saw one TikTok video and decided they were autistic. They’re people who have been thinking about this for a very long time.” After diagnosis, he added, it can help people look back on past problems with more understanding and self-compassion, and encourage them to connect with neurodiverse people. Lord also said that people who are diagnosed with autism can find “access to other people who will be kind and compassionate and want to hear about things that are difficult for them.”
Zoe Gross, director at the Autistic Self Advocacy Network, pointed out other reasons an official diagnosis can help: It can open up access to accommodations in school and work, as well as protections against discrimination, in a way that being just a little different wouldn’t be possible. Gross, who was diagnosed at the age of 4, told me that as a child, he had problems communicating with other children. Knowing he was autistic helped him understand why. Learning that you’re struggling “because you have a disability,” Gross said, “is very empowering.”
Still, many doctors and researchers I spoke with said that misdiagnosis can be a real problem. A child misdiagnosed as autistic can undergo extensive and time-consuming therapy called Applied Behavior Analysis without reason. Misdiagnosis can follow a child through his or her school years, Fombonne said, but different, underlying conditions a person may have—such as depression and anxiety—may go untreated.
For adults, a misdiagnosis can be a self-fulfilling prophecy, O’Sullivan said. A person who thinks they have autism when they are not may avoid risks and new challenges, for example, telling themselves that the brain disease prevents them from, say, taking a leadership role at work or engaging in public speaking. “Once you get a diagnosis, it’s a strong signal that you can’t change,” Frith said. “Instead, the onus is on the environment to change.” (Gross disagreed. “If someone learns they’re autistic, it’s not going to stop them from going out and getting new skills,” he said.) Lord said the diagnosis can encourage “people to exaggerate sometimes normal, normal reactions that some of us have, for example, emotional things.” Instead of trying to do the best they can despite their limitations, the Lord said, they may be “focusing on how I am being persecuted.”
Diagnostic inflation may also make finding a cause of autism, or discovering an effective treatment, less likely, O’Sullivan told me. “Like this community of people we call mentally ill grows and becomes more diverse,” he said, “the chance that anyone will find a specific cause” decreases, because the people being studied can be so different that scientists find many things in common between them.
And testing for mild autism can make life more difficult for people on the more severe end of the spectrum. Those children and adults are “overwhelmed with services; overcrowded out of classrooms,” said Alison Singer, mother of a child with severe autism and president of The Science Foundation of Autismhe told me. Singer said that he hears from parents who say that they have trouble placing their children with severe autism in special autism programs—swimming lessons, karate classes, and so on—because those places have been taken by children with severe forms of autism.
An obvious solution to the problem would be for service providers to provide adequate support to meet the needs of each person who has autism. Those needs can vary depending on whether a person has mild or severe autism, so perhaps the best way to think of the spectrum is as a collection of different conditions with different concerns, priorities, and treatments. Singer’s group has supported the creation of an “autistic” label for autistic people who have low IQ and limited language abilities. People who have trouble socializing or processing senses but need little help with tasks of daily living used to be classified as having Asperger’s syndrome, a term that fell out of favor because of its name. unpleasant profile; A new name for the same situation may be in order. As things stand, the category of investigation that includes CEOs and people who cannot live independently may have outlived its usefulness.
