Autism Self-Diagnosis: Can You Self-Diagnose Autism Spectrum Disorder?

April 14, 2023
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Autism spectrum disorder is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, symptoms generally appear in the first two years of life. Because there is a wide variation in the type of symptoms people experience, autism is known as a “spectrum” disorder. People of all genders, races, ethnicities, and economic backgrounds can be diagnosed with autism spectrum disorder ASD.

Autism spectrum disorder (ASD) is commonly characterized by:

  • Ongoing social problems that include difficulty communicating and interacting with others
  • Repetitive behaviors as well as limited interests or activities
  • Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life

According to the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network, the most recent data collected records an average of 1 in every 44 of 8-year-old children were estimated to have ASD. Also, ASD is 4.2 times as prevalent among boys as among girls.

How to Get an Autism Diagnosis

With the ease of access to medical information online, it is reported that a large percentage of people use the internet to search for information on medical symptoms prior to an official diagnosis. In fact, around one-third of people in the United States self-diagnose using online information.

Diagnosing autism can be difficult, and is best done by medical professionals to avoid misdiagnosis.

“Autism symptoms can look a lot like anxiety, depression, trauma, ADHD, bipolar disorder, etc. You will want a medical professional with expertise in navigating these differential diagnoses. Then, they can recommend the right intervention and treatment. It would be a disservice to self-diagnose and seek treatment if [you] do not have an autism spectrum disorder because ineffective treatment can be harmful,” said Dr. Quynh Wells, psychologist at Baystate Developmental Behavioral Pediatrics.

"What is Wrong with Me?"

Over 90% of teenagers report using social media, spending an average of 9 hours a day online. Popular social media platforms such as TikTok, Instagram and Facebook are flooded with information about mental health and other concerns. Teens are searching, “what is wrong with me?” and “do I have autism?” to explore the symptoms they are experiencing. These social media platforms have mental health professionals, non-professionals, and others with lived experience sharing information about mental health and wellness.

Teens are searching for a way to fit in, looking for a sense of self and identity, and hoping to find explanations for their experiences. During this time teens may try different identities for themselves to see what works and social media has made this easier. It has also made it easier for teens to identify with a diagnosis without seeing a medical professional.

Taking on a Diagnosis That They May Not Have

While there is benefit to these social media sites as they provide insight into mental health and perhaps lessen the stigma that can attach to those who experience mental health challenges, people can often connect to the experience they’re reading or listening to and then believe they are experiencing the same thing. There is a danger to teens and young adults connecting so strongly as they may think they have a serious diagnosis that they may not truly have. Some of the conditions that teens and younger adults are diagnosing themselves with due to seeing people with lived experiences on TikTok and Instagram are ASD, attention-deficit/hyperactivity disorder (ADHD), Tourette Syndrome, and dissociative identity disorder.

Identity Versus Diagnosis

Real harm can come when teens and adults self-diagnose based on what they’re seeing on social media. What is normal teenage awkwardness and what is a mental health condition are getting confused at a startling rate. Self-diagnosing may lead to an exaggeration of symptoms and ignoring the true cause of these symptoms can prevent people from getting the help they need.

“Identity and diagnosis are distinct things. Our identities are, to a large extent, a choice or preference; they are not usually something that can be determined to be correct or incorrect against a set of criteria. They are how we feel about ourselves and are also subject to change. Someone identifying or self-diagnosing as autistic could be valid for them and their identity or understanding of themselves. However, diagnosing has to be based on criteria. Right now, we diagnose an autism spectrum disorder using the Diagnostic and Statistical Manual of Mental Disorders (DSM) and for school Individuals with Disabilities Education Act (IDEA)-based diagnoses and classification. A diagnosis requires some level of impairment in daily functioning. No such threshold is required for a person self-identifying as autistic. Thus, it is very plausible for persons to identify as autistic but not meet criteria for ASD,” said Dr. Wells.

While seeking information online about issues they may be having can be informative and comforting, teens and young adults may end up with a biased perception of what they think they have versus what they may actually have. Dr. Wells continued, “If a teenager or adult is looking to self-diagnose, first ask why? If it is for identity purposes, then they don’t need a doctor. They can look at support groups and other autistic individuals they connect or resonate with. This self-identifying can often relieve anxiety and improve well-being, so I am supportive of that to a limited extent. However, I don’t think autism should be used to explain away problems or issues. In that case, they should seek an evaluation if there are impairments or mental health concerns.”

Getting an Official Autism Diagnosis 

Teens should be cautious when giving themselves a mental health label when experiencing what could be normal teenage stressors. Getting a formal diagnosis by a professional is essential. “If looking for formal assessment, it is best to find someone who specializes in adult autism. If [you] are in college, [you] can contact [your] counseling center to start. There’s no national database, so it does take some research to find someone qualified—usually a psychologist, neuropsychologist, psychiatrist, or some neurologists do autism testing,” said Dr. Wells.

Autism is a spectrum disorder and there is variation in the symptoms and challenges that people may experience. Getting an official diagnosis from a medical professional ensures that you can get the care you  need. Self-diagnosing may bring a sense of community or relief, but risks misdiagnosis and neglecting care options. If you’re experiencing symptoms of autism spectrum disorder or other mental health concerns, contact your primary care provider for more information.

For support and resources about teenage and adult ASD here in Massachusetts, visit the Asperger / Autism Network.

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