Why Self-Diagnosis of Autism Can Be a Problem

Elemy
Updated: January 8, 2021

Self-diagnosis of autism is increasingly common, thanks to the improved availability of medical, scientific information about autism that is available online and in major publications.

Many personal stories about adulthood self-diagnosis of autism flood social media. Pages on government and health websites are dedicated to helping people understand symptoms, and a wide range of biographies about people with autism have now been published.

Adults who are on the autism spectrum but did not receive a good diagnosis as children may struggle to understand why they cannot communicate or socialize the way others do. When they encounter a list of symptoms or a personal story about autism, things can start to make more sense. This can lead to a self-diagnosis, either using an online quiz or another list of symptoms.

Self-diagnosis is ultimately not helpful since it does not give the person access to professional treatment. An official diagnosis of autism can only be made by a doctor.

Problems With Autism Diagnoses

Autism is a developmental disorder. Since the publication of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), autism is clinically referred to as autism spectrum disorder, a name that highlights the range in type and severity of behavioral symptoms.

Since autism is diagnosed based on behaviors, rather than genetics or physiological symptoms, it can be difficult to get right. The clinical definition of autism has been adjusted over the past several decades, as medical research improves understanding around this condition. As a result, more people are receiving accurate diagnoses now, but they may have been misdiagnosed as children or not diagnosed at all.

An estimated 2.2% of adults in the United States are on the autism spectrum, which represents about 5.4 million people. For the most part, people who are on the autism spectrum are diagnosed as children, starting around 2 years old.

Many adults with milder autism symptoms may never have been diagnosed. They may have developed coping mechanisms over the years to manage communication and social interactions. They may not receive a diagnosis until they are adults. Often, their diagnosis comes from personal research into symptoms.

Self-Diagnosis Should Lead to Professional Diagnosis

There is a wide range of information on the internet about autism and other mental, behavioral, and developmental conditions. Personal stories of diagnosis and treatment, interactive questionnaires on websites to check symptoms, and even medical research into autism in children and adults are all easy to access in a few minutes.

Many people read personal anecdotes about receiving an autism diagnosis in adulthood, and they identify with the struggles leading up to it. Others may have a child in their family who is diagnosed with autism, and they recognize symptoms in themselves. Other people may read a book or medical journal and personally identify with the information.

These are all forms of self-diagnosis. While you cannot officially diagnose yourself with autism, this work can start you down the path to an official diagnosis. It is helpful for adults who may struggle in life to assess what they think is wrong and aim to identify the underlying problems.

However, self-diagnosis should not end there. Without talking to a clinician, you cannot get the help you need to manage autism symptoms, even if these symptoms are mild.

Self-Diagnosis of Autism Can Lead to an Inaccurate Conclusion

There are several potential problems with self-diagnosing any condition, including autism.

Clinicians have specific medical training that guides their decision-making process when they provide a diagnosis or a referral for a diagnosis. The average person does not have the skills to rule out symptoms of other disorders.
You cannot see yourself objectively. No one can. A clinician can ask you specific questions to understand how your experiences fit into a diagnostic framework. This outside viewpoint is critical to accurate diagnoses.
You cannot get access to medical treatment without an official diagnosis, even if you do self-diagnose accurately. Therapy can greatly help you, but you won’t have access to insurance coverage for this care without a medical diagnosis.

It is possible that symptoms similar to autism can appear in adulthood, and these are signs of other issues that may need different therapy or medical interventions. People who have autism will have struggled with communication, socialization, cognition, and even mobility for their entire lives.

Some people may experience emotional dysregulation issues. These issues can cause symptoms similar to autism to develop, and people may misdiagnose themselves as a result. Symptoms of an emotional imbalance include:

Feeling “off” or isolated without knowing why.
Feeling very anxious, moody, or lethargic.
Having memory problems, digestive issues, and muscle aches.

Emotional imbalances can lead to more serious co-occurring mental or behavioral issues, like:

Persistent depression.
Social anxiety.
Panic attacks.
Anhedonia, or an inability to feel pleasure.
Obsessive-compulsive tendencies.

Working with a therapist on emotional imbalance can alleviate many of these symptoms, including those that may mimic autism. If you visit a doctor or therapist to discuss your symptoms, they may be able to tell you if you struggle with a different underlying condition. An accurate diagnosis can help you get the best possible treatment for the condition you actually have versus you attempting to self-treat a condition you think you might have.

Get Help From Medical Professionals After Self-Diagnosing Autism

For the most part, autism diagnostic tools focus on children’s symptoms and parents’ reports. There are several questionnaires available to diagnose autism in adults, but there is not a set of surveys or questions for adults, unlike there is for children.

If you suspect you might have undiagnosed autism as an adult, your doctor or therapist may ask you about your childhood experiences, any symptoms you remember and can report, and how you experience the world now. Observe and report repetitive behaviors as well as rigidity with schedules, expectations, or your personal life. Tell your doctor if you tend to take phrases literally. All of these signs can indicate that you may be on the autism spectrum.

To thoroughly answer these questions, you can start with an online quiz, reading a list of symptoms, or talking to people with autism about their experiences. Oftentimes, this information can shed light on the symptoms you struggle with and give you a baseline understanding before you talk to a professional.

Self-assessing and self-referring are good ways for many people who struggle with mental, behavioral, and even some developmental disorders like autism to get started on a better path. Once you understand your symptoms in a different context, you can start asking for help.

If you experience one or more of these five mental “themes,” you can consider looking into an autism diagnosis, either starting online or going directly to a medical professional. These themes are:

Doubting yourself often and trying to manage that.
Struggling to feel like you belong.
Having trouble understanding yourself, especially in a larger social context.
Questioning your need for a formal diagnosis.
Regularly feeling “othered” or isolated in groups.

Self-Assessment or Self-Referral of Autism Might Work Better to Get Treatment

Adults are on their own to seek help from a doctor or counselor. Typically, people who specialize in diagnosing autism work with children, watching their behaviors and discussing developmental struggles with their parents. Thus far, there is little standardization to help adults receive a diagnosis of autism.

More information on autism is helping more adults realize they may have the disorder. Some people may even accurately diagnose themselves before seeing a medical professional, but again, a self-diagnosis is not official.

After self-diagnosis, work with your doctor or therapist to get an official diagnosis. This professional may refer you to a specialist, such as a psychiatrist or neurologist, who can help you with a diagnosis.

The best evidence-based treatment for people with autism, including adults, is applied behavior analysis (ABA) therapy. This approach to therapy uses objective measurements of your symptoms and improvements, so you and your therapist can take on your struggles together. For adults who are newly diagnosed with autism, ABA therapy can help them overcome stress related to a lifetime of issues related to a missed diagnosis.