Look at any graph showing the rise of autism in the United States over the past century, and the line goes straight up. However, regardless of various fear-mongering broadcasts and questionable groups using scare tactics and crying “epidemic,” the spike in diagnoses is not believed by scientists, therapists, nor epidemiologists to be an actual epidemic.

What has changed is the diagnostic criteria and the medical, therapeutic, and autistic communities’ perception of what it means to be on the spectrum, as well as an increased understanding of how many people share these traits and characteristics, which are much more common than previously thought.

As recently as the 1980s, researchers estimated that as few as 2 in every 10,000 children had symptoms that would warrant a diagnosis of autism, and pediatricians would go their whole careers without diagnosing a single case.

In 2020, the CDC estimates that 1 in every 59 Americans is on the autism spectrum, making up a significant minority of over five million people nationwide with their own spokespeople, meet-ups, newsletters, experts, and nonprofit organizations run by and for autistics themselves. What changed, and how should it affect who receives a diagnosis and identifies as autistic?

A Difficult History

For most of the past, parents dreaded finding out anything was atypical in their child’s development, because a child that exhibited symptoms on the autism spectrum, such as difficulty communicating and socializing with others or retreating into their own world, was likely to be wrongly labeled as “mentally retarded,” psychotic, or schizophrenic.

The doctor who made that incorrect diagnosis would then recommend that parents leave the child at an institution where the conditions were horrific, remove photos of them from the house, and move on as if the child had never existed.

Even after Dr. Leo Kanner created the first very narrow, severe, and limiting diagnostic criteria in 1943, the result was similarly devastating for families. Autistic symptoms were blamed on parents who were diligently taking their children to the best experts and seeking treatment, which increased the fear of diagnosis, as experts wrongly theorized that it was caused by cold and unloving mothers, and lumped early autistic behavior in with “childhood schizophrenia” as in the DSM 1 and 2, a catchall term for infants exhibiting symptoms that were not yet understood, and which we now know was incorrect, as schizophrenia is actually exceedingly rare in children.

The term “infantile autism” was introduced in the DSM 3 in 1980, but even then, there was no name or acknowledgement of anyone on the spectrum who was not an infant, and parents continued to be irrationally blamed for their children’s symptoms by the same experts they sought out for help.

Broadening The Spectrum Of Diagnosis

By the 1990s, the psychiatrist and autism researcher Lorna Wing first added to the criteria for diagnosis to include a wider age range of symptoms. She also opened up the idea that a person could be diagnosed as autistic even if they exhibited some—but not all—of the characteristics on her broad “spectrum.”

This broader definition coupled with the fact that the Americans with Disabilities Act (ADA) required an official diagnosis to receive therapy or accommodations in school, contributed to the increase in diagnosis.

By the time the DSM 4 was published in 1994, autism stopped being a diagnosis for infants alone and was introduced to the world as a set of traits and behaviors that could affect a person of any age. This caused an explosion in diagnoses, creating the impression, for some that there was some mysterious epidemic at play.

But what was actually happening had a lot more to do with a community in great need of services and accommodations (at school and in therapists’ offices) getting the diagnoses they required in order for health insurance companies to sign off on paying for these supports as a result of the ADA.

Why Seek Diagnosis or Identify as Autistic?

A quarter of a century later, we know that the presence of autistic traits does not necessarily mean that a person needs support or a diagnosis. But, for the majority of autistic people, a diagnosis can be very beneficial, and not only because books like the DSM 5 act as gatekeepers for services and support.

All autistic people benefit from supportive and structured educational approaches that take into consideration their shared characteristics, regardless of where they may happen to be on the spectrum.

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Members of the autism community describe getting a diagnosis or realizing they are on the spectrum, particularly when they had to wait for it to happen later in life, as akin to a coming out. It’s as if they finally realize who they are, and it opens up the world and their interactions with others, both on the spectrum and off.

Many undiagnosed autistics had difficult childhoods where they always felt that there was something different about them. Not having an explanation for that difference caused feelings of being an outsider or outcast or worse.

Without knowing what autism is or that they shared a series of traits and characteristics on a spectrum with others like themselves, many undiagnosed autistics ended up filling in the blanks by blaming themselves for their differences, which never helps.

When autistics are diagnosed it can be empowering. They learn that, in addition to some traits that can be disabling, they also have traits that can be enabling, such as a powerful logical reasoning capability. They also discover that their disadvantages and abilities are not specific to them alone; they’re part of a group.

There’s a practical side to having a diagnosis too. An autistic person can identify themself and make self-aware statements such as, “Please know that I am very interested in talking to you even if I am not making eye contact, I’m on the spectrum,” as opposed to feeling shame that they are unable to feign neurotypical etiquette in those situations without explanation.

As autistic and neurodiversity groups flourish in schools, universities, companies, online, and regionally, a diagnosis can also bring with it a new community, recognition, and support, which can be exciting. Suddenly a person who has always felt isolated and alone can feel like they have found their “tribe” to share similar stories of experiences and common interests with after class or work.

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Last Updated: Aug 17, 2020