What’s it like to live with undiagnosed autism until adulthood?

Autism spectrum disorder (ASD) — commonly referred to as autism — is a form of neurodiversity that can look different from person to person. It typically affects things like communication, social skills, learning, and behavior. 

Research shows that approximately one in four teens with autism hasn’t been diagnosed. This problem is especially prevalent among people who were assigned female at birth (AFAB), as autism tends to present differently in these people. As many as 80% of AFAB people with autism are still undiagnosed by age 18. 

It’s difficult to estimate exactly how many of these young people will enter adulthood and never receive a diagnosis. But, fortunately, with increased understanding and awareness, more adults with autism are gaining access to the help they deserve. 

By learning more about the signs of autism in adults, you can become a better advocate for yourself and anyone else who may need support.

What signs can make you realize you might have autism?

Autism exists on a spectrum, and that means symptoms can range in severity from mild to severe. It also means some autistic people have higher support needs than others. 

If a person’s symptoms don’t significantly impact their ability to learn, work, form relationships, or care for themselves, autism can be hard to detect. These milder presentations may not require intensive support, and many adults with autism live fulfilling, independent lives. 

Autism symptoms typically first show up in early childhood. It’s often diagnosed when a child begins having trouble learning, regulating their thoughts or behaviors, or connecting with peers. As a person gets older, these symptoms can evolve, and autism can present differently in children versus adults. 

For example, some of the signs of autism in adults include:

• Feeling awkward in social situations
• Having trouble understanding what others are thinking or feeling
• Having difficulty making friends
• Preferring to spend time alone instead of with other people
• Frequently missing social cues or taking things too literally
• Fixating on patterns others may not notice
• Feeling uncomfortable with eye contact
• Being overly blunt
• Experiencing sensory sensitivities
• Having an intense fixation on certain interests

While these are some common experiences of adults with autism, your experience may be different if you’re a person who was assigned female at birth (AFAB). For example, you might not experience all of the academic, social, or behavioral challenges often associated with autism. 

You might also “mask” your symptoms to fit in with other people, often by copying others’ behavior. However, just because your challenges might be harder to detect doesn’t mean you’re any less deserving of support.

How can autism go undiagnosed until adulthood?

Today, autism is usually diagnosed during childhood — often once a child enters school. However, in the past, there was less awareness about the signs and symptoms of autism. 

So, many adults didn’t receive an accurate diagnosis or additional support when they were younger. This has led to a population of adults who are now, for the first time, realizing that they might be living with autism. 

There are several reasons why autism can go undiagnosed until adulthood, including:

• Mild or atypical symptoms: If your symptoms haven’t previously been diagnosed, it could be because they didn’t cause a significant interruption in functioning. As mentioned above, your symptoms may not fit the traditional pattern if you’re an AFAB person, and that can also make them harder to detect.
• Lack of awareness: Today, more people are aware of the signs of autism. But in the past, it may not have been detected unless a person had a serious or debilitating impairment.
• Misdiagnosis: Autism is often accompanied by other mental or physical health conditions. Having overlapping conditions can complicate both the diagnostic and treatment processes.
• Coping strategies: If you’ve developed techniques for managing or masking your autism symptoms, they may go undetected. Similarly, if you have a strong support network and/or live and work in a structured environment, your symptoms may be easier to manage.
• Racial disparity: Racial bias and stigma can lead to the mislabeling of symptoms of autism as “problem behavior,” especially among Black children. Research shows that, on average, Black children don’t receive a diagnosis until three years after their parents voice concerns.

What are the effects of living with undiagnosed autism?

Just as there’s a spectrum of autism symptoms that can affect different people in different ways, the effects of living with undiagnosed autism can also vary significantly. For some people, it might mean difficulties at school, work, or in relationships. Autistic adults might also have trouble with time management, organization, social interaction, emotional regulation, or self-care. 

But for others, not receiving an accurate diagnosis or adequate support can lead to more serious outcomes. There’s evidence to suggest that untreated autism can lead to a higher risk of mental health concerns like depression, anxiety, unhealthy substance use, self-harm, and suicidality.

How to deal with realizing you have undiagnosed autism

There are many reasons why you might reach adulthood and suspect that you have undiagnosed autism. You may have never had access to resources to help you get an evaluation. And like many adults, you likely came of age at a time when there was limited public awareness about autism. 

Additionally, you may have had parents, teachers, or other well-meaning caregivers who simply didn’t understand what you were experiencing. Just know that no matter your age, you can access support to help you thrive in all of the important areas of your life.

If you’re an adult and think you might be autistic, one of the most important things you can do for yourself is seek a professional evaluation. Having an accurate diagnosis will open up conversations and opportunities for you to get the help you deserve. 

Depending on your needs, this might include:

• Individual therapy to help you manage your emotions, behaviors, and any co-occurring mental health conditions 
• Group support to work on communication and social skills and help you feel less alone
• Occupational support to help you practice the life skills you need to complete everyday tasks (like organization, cooking, cleaning, and managing finances) 

Find care with Rula

If you’re an adult and you believe you’re living with undiagnosed autism, you’re not alone. Research shows that many adults, even those older than the age of 50, have gone their entire lives without an accurate diagnosis. But fortunately, with increased awareness, many autistic adults are finally getting the support they deserve. 

No matter your age or the challenge you’re facing, Rula can help you access the care you need to manage your mental health. In just a few clicks, you can select a provider who takes your insurance and whom you can meet with via a convenient virtual appointment. And thanks to our extensive network, you won’t wait weeks or months for an appointment. When you’re ready, you can schedule your first session with a provider of your choice as soon as tomorrow.

Find a therapist with Rula