Prosper Health's Autism Resource Center

Have you ever heard the phrase, “If you hear hoofbeats, think horses, not zebras”? This metaphor, dating back to Dr. Theodore Woodword in the 1940s, reminds doctors what to prioritize when evaluating a patient’s symptoms. It tells doctors to focus on the most likely diagnosis (the “horse”) for the presenting symptoms before considering what’s less likely (the “zebra”), even if the unlikely zebra seems to fit. 

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Being autistic can feel like being a zebra in a world of horses—which is no wonder since autistic people make up only about 2% of the U.S. population. Autism is a neurodevelopmental condition characterized by social and communication differences and a preference for sameness and repetition. It’s a specific constellation of traits, the presentation of which varies greatly from person to person. 

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Misconceptions around the autism spectrum and common biases mean that many autistic individuals go undiagnosed or misdiagnosed. By some estimates, approximately 1 in 4 autistic individuals (and 1 in 3 autistic women) have received a misdiagnosis of a psychiatric condition before being diagnosed with autism. Autism is not a mental health diagnosis, but it can have some things in common with mental health diagnoses, and some clinicians who don’t specialize in autism might not be able to tell the difference.

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The misdiagnosis of autism matters to healthcare providers, educators, and, most of all, autistic individuals and their families. Keep reading to learn about the consequences of misdiagnosis and why autism might be misdiagnosed.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects the development of a person’s brain and nervous system. ASD is part of the natural diversity in human brains, traits and behaviors, also called neurodiversity. Autism occurs along a spectrum, and each autistic person may have a very different combination and intensity of autistic characteristics and support needs. In general, when compared to neurotypical peers, autistic individuals typically experience differences in sensory and cognitive processing, social approaches, communication and their relationship to routine and repetition.

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ASD has long been stigmatized and misunderstood, even within the medical community. Often, autism is associated with early childhood, but in reality, it’s a lifelong diagnosis. The CDC estimates that nearly five and a half million US adults are autistic, yet the scarcity of resources for autistic adults is staggering. A 2019 study found that 84% of US counties have no diagnostic resources for autistic individuals of any age, and accessing high-quality mental health services as an autistic adult is notoriously difficult.

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For many autistic adults, this gap in resources can make getting help daunting—but all the more important. Autistic adults are more likely to be diagnosed with a mental illness––between 40 and 50% of autistic individuals have or have had anxiety, and as many as 40% have or have had depression, compared to 18.2% and 21.4% of all US adults, respectively. Even more worrying, 66% of late-diagnosed autistic adults reported experiencing suicidal ideation at some point in their lives. Stigma and a broad social failure to accommodate autistic needs are likely drivers of poorer mental health outcomes among autistic adults.

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Autistic adults can thrive despite adversity, but many of us confront similar challenges and could benefit from support. These can include, but are certainly not limited to:

• Masking and unmasking
• Autistic burnout
• Sensory sensitivity and sensory overload
• Disclosure and accessing support
• For late-diagnosed autistic adults, processing a new diagnosis

Complex PTSD, or CPTSD, is a mental health condition people can develop after prolonged exposure to trauma. CPTSD is fairly common among autistic individuals, and shares a number of features with autism, like sensory sensitivity and emotional dysregulation. However, they are distinct diagnoses, differing in key areas like how and when they emerge during a person’s life and goals for treatment.

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Autism spectrum disorder is a neurodevelopmental disorder that impacts how an individual communicates and experiences the world. Autistic behaviors may include intense and limited interests, repetitive behaviors, sensory sensitives and difficulty recognizing and expressing emotions. 

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Autistic individuals may experience meltdowns. A meltdown is an intense and involuntary reaction to the challenges that autism presents, like intense sensory experiences, navigating tricky social situations and emotional dysregulation.

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In mental health circles, a trigger refers to an event or feeling that causes a strong emotional response. Neurotypical and neurodiverse individuals alike have triggers, and everyone’s triggers are different. A neurotypical person may feel sadness or nervousness when being confronted with one of their triggers. For autistic individuals, however, being exposed to a trigger can lead to a meltdown. 

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Meltdowns are stressful and incredibly unpleasant to experience. For autistic adults, meltdowns will happen occasionally, but having a better understanding of individual triggers may help them prevent meltdowns when possible.

Our understanding of autism spectrum disorder (ASD) has grown significantly over the years, leading to important changes in how we diagnose and describe its various presentations. One of the most significant changes to the ASD diagnosis is the inclusion of Asperger’s syndrome as part of the autism spectrum.

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Asperger's syndrome was added to the DSM-IV in 1994 but was moved underneath the diagnostic umbrella of “Autism Spectrum Disorder” in the DSM-V in 2013. Though Asperger’s syndrome is considered to be part of the autism spectrum, it presents symptoms that are similar to ASD but may be less severe or pervasive. Asperger’s is typically marked by:

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• Impaired social interaction and nonverbal communication
• Restricted interests
• Repetitive behaviors
• Lack of awareness about how their actions may impact others

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The main difference between Asperger’s and autism is that people who were formerly diagnosed with Asperger’s may have less severe symptoms and no speech delay. In fact, those who have been diagnosed with Asperger’s may have advanced speech and language skills. 

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So, while Asperger’s used to be its own diagnosis, the current diagnostic standards for autism spectrum disorder include Asperger’s. Those who may have, in the past, been diagnosed with Asperger’s syndrome are now likely to be diagnosed with level one autism or to be classified as having low support needs. 

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While it’s true that diagnostic standards have been updated due to the fact that Asperger’s and autism have a large overlap of symptoms, Asperger’s is no longer used also due in part to its controversial namesake. Asperger’s syndrome was first formally named by Hans Asperger after he conducted a comprehensive study on a group of children with autistic traits in 1944. Though Asperger was never an official member of the Nazi Party, he worked closely with them and cooperated with their policies, which targeted neurodivergent individuals. Asperger’s ties to nazi policies, and the harsh language he used to describe his patients is among the reasons that the term “Asperger’s” is no longer widely used.

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However, even though the term is largely outdated, many neurodivergent people were originally diagnosed with Asperger’s syndrome and still resonate with it. Therefore, it’s important to approach the controversy surrounding the name with nuance.

When most people think of psychosis, they think of schizophrenia—not autism. However, psychosis can be associated with several different diagnoses. Although psychosis is not a symptom of autism, it’s more common for autistic individuals to experience psychosis at some point during their lives than it is for neurotypicals.

Psychosis often involves hallucinations and delusions, where an individual perceives things that are not there or believes things that are untrue, respectively.  These experiences can feel very real and quite frightening. However, many forms of support can help people thrive while reducing, managing or eliminating symptoms of psychosis.