Unraveling the Mystery of Misdiagnosed Autism

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.

Many autistic traits can overlap with symptoms of other diagnoses. Here are some common misdiagnoses and examples of potential commonalities between each and the autism spectrum.

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While these are some common misdiagnoses, it is important to note that autism can co-occur with these and many other conditions. For example, many autistic people proudly claim the identity of “AuDHD” because 50-70% of autistic people also have co-occurring ADHD.

What does it mean for someone to receive a misdiagnosis and not know that they’re actually autistic?

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Misdiagnosis has many consequences, including:

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• Receiving incorrect treatments
• Negative self-perception
• Stress
• Anxiety
• Depression
• Lack of self-understanding 

When you don’t know that autism is the cause of your struggles, you can’t fully address it or understand what you can do to feel better. An autism diagnosis empowers you to know yourself and your needs better.

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Personally, when I got my diagnosis, I learned that what I called anxiety for a large part of my life was actually sensory overload. Approaching the problem as anxiety wasn’t helping, whereas adapting my sensory environment nearly eliminated the problem. 

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Unfortunately, many autistic people haven’t been diagnosed, and are therefore less empowered to understand and take care of themselves. 

Misdiagnosis happens for several reasons, including difficulties getting an assessment, misinterpretation of autistic traits and a general lack of awareness. Some misconceptions about autism lead to misdiagnosis, such as thinking that if someone makes eye contact or wants to make friends, they can’t possibly be on the autism spectrum. Providers may even pick up on one part of an autistic person’s struggles but miss the whole picture. Or, they may be affected by biases around gender and race.

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Parable of the elephant

While autism is not a mental health diagnosis, an autistic trait can sometimes be misinterpreted as a symptom of a psychiatric condition such as bipolar disorder or borderline personality disorder. When providers accurately pick up on one element of the autism spectrum but aren’t perceiving the whole constellation of autistic traits, they may misdiagnose someone as having a disorder that reflects just the part they’re seeing. 

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Neuropsychologist Dr. Theresa Regan uses the parable of the elephant to help us understand how this happens. The parable of the elephant is a story of blind people who a king orders to describe the nature of an elephant by touch. They each stood touching one part of the elephant and reported it to the king. The person touching the elephant’s leg said an elephant is like a post. The person touching the elephant’s ear said an elephant is like a fan. The person touching the end of the tail said an elephant is like a broom. They fought with one another over what an elephant was like, and none of them could agree. 

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Similarly, clinicians have the difficult task of putting together a complete image of someone in a limited time frame in a single setting. Misdiagnosing autism is like the parable of the elephant because even if a clinician accurately perceives one part of autism, they may be missing the whole picture. Additionally, most clinicians, such as mental health therapists, aren’t actively looking for autism because they aren’t specially trained in diagnosing it. Sometimes, it’s not even on their radar. Many adult mental health evaluations don’t assess for childhood traits that could contribute to an alternate diagnosis. 

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This is one of the reasons many late-diagnosed autistic adults end up with a few psychiatric diagnoses by the time they’re correctly identified as autistic. 

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Common biases

Some common biases contribute to the misdiagnosis of autism, such as those around people assigned female at birth and people of color.

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Bias strongly contributes to the higher prevalence of autism diagnoses in people assigned male at birth (AMAB). Those who are assigned female at birth (AFAB) and autistic girls may have autistic traits that appear less typically due to their gender socialization, and clinicians may have certain gender-related expectations about autism, as well. This bias is partly because the diagnostic criteria were written on early clinical records of autism that were based primarily on young boys. Despite the increase in awareness around autism in those who are AFAB, there is still a diagnostic discrepancy showing that people who are AMAB are still identified at higher rates.

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Additionally, people of color and Black people face much bias in their diagnostic journeys. Until just a few years ago, white children diagnosed with autism outnumbered Black, Hispanic, and Asian or Pacific Islander children. Black children, for example, experience delayed diagnosis compared to white children and have been two or three times more likely to be first diagnosed with a behavioral diagnosis like adjustment disorder or conduct disorder. This discrepancy has been attributed in part to clinicians dismissing parents’ concerns about their autistic child as poor parenting or by referring to harmful stereotypes.

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In addition to common biases, the masking of autistic traits can be a barrier to an accurate diagnosis.

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Masking autistic traits

Masking (a common term for camouflaging) is something some autistic people do to try to appear less autistic. An autistic person might suppress their stims, for example, or force eye contact even though it’s very uncomfortable. Whether consciously or unconsciously, masking autistic traits can affect someone’s access to an autism diagnosis. Autism is assessed based on a person’s outward behaviors, and masking can make it difficult for a clinician to see these outward signs. 

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It is possible to have autistic traits and not be autistic. Autistic traits that don’t meet the threshold for diagnosis are sometimes referred to as ‘sub-clinical autism’ or, in autism research, the ‘broader autism phenotype.’ Many individuals who are assessed for autism are not diagnosed, and some who are not formally diagnosed still identify as autistic.

Due to barriers in accessing autism spectrum diagnoses, self-diagnosis has become a widely accepted form of identification among the autistic community. While some people may choose to pursue a professional diagnosis, others may be content to declare that they’ve diagnosed themselves. Some hesitate to pursue the diagnosis because they fear bias, want to keep it off their medical record or don’t need documentation to pursue accommodations.

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For those who choose to pursue a professional autism assessment, the process can be very difficult. First, you or someone else must be aware of autism and refer you for an assessment. Then, a specialized clinician must be available to complete the assessment. The person must also be financially able to afford the diagnosis, which may or may not be covered by insurance. 

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However, many people find immense relief and validation in having an official autism diagnosis. Personally, I love hearing from newly diagnosed people because of the power of integrating autism into your identity and finally learning how to best care for yourself. 

Getting an autism diagnosis involves the assessment of social communication and behaviors by a clinician, such as a psychologist or psychiatrist, who’s specially trained to assess autistic traits. The process itself consists of a combination of interviews, observations and assessment tools. For adults, the interview includes questions about your developmental history and, if possible, an interview with someone who knew you as a child.

For many who have lived their lives misdiagnosed, receiving an accurate autism diagnosis can feel like finally coming home. 

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If you suspect that you may have been misdiagnosed and are struggling to get the answers you need, Prosper Health is here to help. Our experienced psychologists specialize in adult autism assessments, providing neurodivergent-affirming care in a virtual setting. With most major insurance plans accepted, we make it easier for you to access the support you deserve.

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Finally understanding your own neurology can empower your own self-care and provide access to the accommodations and validation you need. Schedule an autism assessment today–fill out the form below or call us directly to start your journey with Prosper Health. Let us help you find clarity.