Not long ago, autism was considered rare, but now it’s fairly common: Autism diagnoses in children have increased nearly fivefold across the United States in the past couple of decades, from one in every 150 8-year-olds in 2000 to one in every 31 in 2022. Adult diagnoses have also gone up rapidly in recent years.
According to many researchers, a significant portion of this growth comes from a rise in diagnoses of milder forms of autism—cases in which people may have a normal to high IQ and typical speaking abilities but struggle with social interactions or have intense interests. Severe autism, in contrast, is generally associated with low IQ, little or no verbal speech, and a probability that the person will need some form of lifelong care or supervision. A study published last year found that the prevalence of autism with “mild, borderline, or no significant adaptive challenges” increased from 2000 to 2016, but that the frequency of cases involving “moderate to profound challenges” decreased slightly. And the likelihood that an autistic person also has an intellectual disability has declined meaningfully since the 1980s, from about 70 percent to about 30 percent.
I spoke with five researchers and clinicians who say they’re concerned about the possibility that too many people are being diagnosed with mild autism. They say that some individuals who have received these diagnoses might instead have anxiety or another mental illness. Others might not have any diagnosable mental-health condition, and may be incorrectly perceiving their typical social struggles as a sign that they have a disorder. “Some of those people absolutely have autism,” Catherine Lord, a clinical psychologist at UCLA who specializes in autism, told me. But some people who think, “Maybe this is the answer to why I feel different or I’m not happy,” may simply be mistaken, she said. This overdiagnosis trend, these experts say, can hurt both people incorrectly classified as mildly autistic and those with more severe forms of autism.
To be sure, researchers don’t know what the average expected number of autism cases in a given population should be. Generally, to be considered autistic, a person must have exhibited social difficulties and repetitive behaviors—such as hand-flapping and spinning—from before the age of 5. But no brain scan or blood test can diagnose the condition, so clinicians must rely on a person’s own account—or their parent’s account—of their challenges. A recent study found that nearly half of the children who had been given an autism diagnosis in one clinic did not meet the criteria for autism when they were reevaluated in another clinic. Diagnoses can be especially off for kids with visual or hearing impairments or other disabilities. In adults, autism diagnoses are inaccurate about 20 percent of the time, even with rigorous tests, Lord said.
[Read: Accommodation nation]
Some of the inconsistency in diagnosis can be explained by the constraints of the health-care system: Ideally, psychiatrists and psychologists take into account interviews with a patient’s teachers and parents—or, in the case of adults, their siblings and friends. But clinicians may not have the time to devote that much attention to their patients, and they don’t want to miss any cases. Lord said that many professionals therefore diagnose patients based solely on the patient’s stated symptoms or history. The diagnostic criteria, too, are somewhat unclear: Bad eye contact, for example, can be a symptom of autism, but it can also be a sign of schizophrenia, ADHD, social anxiety, or depression, Eric Fombonne, a professor emeritus of psychiatry at Oregon Health and Science University, told me. The Diagnostic and Statistical Manual of Mental Disorders states that autism causes “impairments,” but what constitutes an impairment can be subject to interpretation.
Some of the experts I spoke with also told me that more people seem to be seeking out an autism diagnosis now than they did in the past. Having a precise label for social challenges or feelings of alienation can feel freeing and relieving. Unlike, say, those for schizophrenia or bipolar disorder, an autism diagnosis has become desirable to some people, Uta Frith, an emeritus psychology professor at University College London who was one of the first people to study mild autism, told me. She said that there’s been “a big increase in the demand for the diagnosis.” According to Fombonne, autism “has become chic.” Lord said that she, too, has seen more patients asking whether they should be diagnosed with autism, and many of them have relatively mild symptoms. Lord gave an example of a type of person she sees who has a high IQ, may be depressed or anxious, and is questioning their gender or sexuality. “So somebody really trying to figure themselves out,” she said. They “may be somewhat socially awkward, often have friends, but feel like there’s something missing.”
Content about autism on social media may be inspiring some people to seek out these diagnoses. Influencers have flooded TikTok and Instagram with videos describing supposed “hidden” symptoms of autism, such as intensely enjoying something you’re interested in and looking up the menu of a restaurant before you go. These videos suggest that you might be autistic if you notice subtle communication styles, dislike small talk (even if you’re good at it), or go indoors when it’s too hot outside. Social media has also promoted the idea that many autistic people aren’t diagnosed until later in life because they “mask,” or camouflage their autistic traits. In her book The Age of Diagnosis, the British neurologist Suzanne O’Sullivan describes a woman named Poppy who was given an autism diagnosis in her early 20s. O’Sullivan writes that looking at TikTok crystallized Poppy’s sense that she probably was autistic. “I wanted to know if there were other people like me out there, so I went on TikTok and I found that there were lots,” Poppy said, according to O’Sullivan.
Perhaps unsurprising, one study found that only about a quarter of the most popular videos about autism on TikTok were accurate. Nevertheless, a correct diagnosis of mild autism can be beneficial. Donna Henderson, a Maryland neuropsychologist who specializes in less severe forms of autism, told me, “There is just no bigger gift we can give to somebody than knowing who they are.” Most of her clients are not swayed by social media, she said. “The people who I’m seeing 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.” Having a diagnosis, she added, can help individuals look back on past difficulties with more understanding and self-compassion, and prompt them to connect with neurodiverse people. Lord also said that people who find out that they have autism can get “access to other people who will be kind and sympathetic and want to hear about the things that are hard for them.”
Zoe Gross, a director at the Autistic Self Advocacy Network, pointed to other reasons that a formal diagnosis can help: It can unlock access to accommodations at school and at work, as well as protection from discrimination, in a way that simply being a little different would not. Gross, who was diagnosed when she was 4, told me that as a child, she had trouble connecting with other kids. Knowing she was autistic helped her understand why. Learning that you struggle “because you have a disability,” Gross said, “is really empowering.”
[Read: Why couples therapists are sick of ‘therapy-speak’]
Still, many of the clinicians and researchers I spoke with said that inaccurate diagnoses can be a real problem. A child erroneously diagnosed with autism might be subjected to an intensive and time-consuming therapy called Applied Behavior Analysis for no reason. An improper diagnosis can trail a child through their school years, Fombonne said, but a different, underlying condition the person might have—such as depression and anxiety—might go untreated.
For adults, a faulty diagnosis can become a self-fulfilling prophecy, O’Sullivan said. Someone who considers themselves autistic when they aren’t might shrink away from new risks and challenges, for instance, telling themselves that a brain disorder prevents them from, say, taking on a leadership role at work or engaging in public speaking. “Once you’ve got the diagnosis, it’s very strongly implied that you can’t change,” Frith said. “Instead, the onus is on the environment to change.” (Gross disagreed with this. “Someone learning that they’re autistic is not gonna stop them from going out and acquiring new skills,” she said.) Lord said that a diagnosis might encourage “people to exaggerate sometimes the normal, ordinary reactions that some of us have to, for example, sensory things.” Rather than try to do the best they can despite their limitations, Lord said, they might be “focusing on how mistreated I am.”
Diagnostic inflation might also make finding the cause of autism, or discovering effective treatments, less likely, O’Sullivan told me. “As this community of people that we call autistic grows and becomes so much more diverse,” she said, “the chances that anyone will ever find a specific cause for it” diminishes, because the people being studied may be too different from one another for scientists to find many commonalities among them.
And overdiagnosing mild autism can make life harder for people on the most severe end of the spectrum. Those children and adults are “crowded out of services; they are crowded out of classrooms,” Alison Singer, the mother of a severely autistic adult child and president of the Autism Science Foundation, told me. Singer said that she hears from parents who say that they have trouble placing their severely autistic kids in autism-specific programs—swimming lessons, karate classes, and the like—because the slots have been taken up by kids with milder forms of autism.
An obvious solution to that problem would be for providers to offer enough assistance to meet the needs of everyone who has autism. Those needs may differ 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 a “profound autism” label for autistic people who have a low IQ and minimal language abilities. People who struggle with socializing or sensory processing but require little support for daily life tasks used to be classified as having Asperger’s syndrome, a term that fell out of favor because of its namesake’s unsavorybiography; a new name for the same condition might be in order. As it stands, a diagnostic category that encompasses both CEOs and people who cannot live independently may have outlived its usefulness.