Being diagnosed with autism spectrum disorder as an adult

A diagnosis of autism spectrum disorder (ASD) is most commonly considered an issue that affects children. But a growing number of adults are now being diagnosed with ASD. The topic may be on your radar because a number of well-known people have recently shared their adult ASD diagnosis, including the singer Sia and actor Bruce Willis’ daughter Tallulah.

It’s a relatively new field and for that reason there aren’t any specific criteria that are used to diagnose the condition in adults, but healthcare providers can adapt the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, the standard handbook used by providers to diagnose mental health conditions) to evaluate adults who think they may be living with ASD.

What is ASD?

ASD is a form of neurodivergence, a term that means that people’s brain differences affect how their brain works, and it is the most common neurodevelopmental disorder. It’s not a single condition, but rather a group of related conditions that share a core set of symptoms.

A complex developmental and neurological condition, ASD can affect communication and behavior. The type and intensity of symptoms varies from person to person.

Why would someone seek an ASD diagnosis in adulthood?

Many people who are diagnosed as adults have felt they’re different than those around them all their lives but didn’t know why or received other mental health diagnoses, like social anxiety disorder, obsessive compulsive disorder, ADD, social communication disorder, or anxiety, related to their symptoms. Some people seek an evaluation when their child is diagnosed with ASD and they recognize similar behaviors in themselves.

Having a diagnosis can help you, family, and friends better understand why some things, like communication or socializing, are challenging for you. The diagnosis may also lead to a reassessment of a previous mental health diagnosis and offer a different approach to managing symptoms. In some cases, the diagnosis can help you get accommodations at work or school.

Why weren’t you diagnosed in childhood?

For people who are older, ASD wasn’t included in the DSM and so wasn’t in the list of possible diagnoses at the time. Some doctors attributed the symptoms of ASD to a form of childhood schizophrenia, a theory that was disproved in the 1960s and 70s.

Children who meet all their developmental milestones and perform well in school are also sometimes not diagnosed with ASD or are misdiagnosed with other conditions, including ADHD and separation anxiety.

Race and socioeconomic status also play a role in underdiagnosis or missed diagnosis of ASD. One study found that Black, Latinx, and Asian children were less likely to be diagnosed with ASD than white children, with Black children being 2.6 times more likely to remain undiagnosed compared to their white peers.

What are the signs and symptoms of ASD in adults?

There are a number of common signs and symptoms of ASD that adult experience, including:

• Differences or challenges with communication, especially difficulty understanding and interpreting nonverbal cues like facial expressions, gestures, and eye contact and understanding tone of voice and non-concrete language such as metaphors and issues expressing how you feel
• Social challenges, including trouble reading social cues and joining conversations, anxiety in social situations, problems making friends, seeming rude or blunt to others, and difficulty understanding what other people think or feel
• Hyperfocus on certain topics or areas of interest
• Heightened skills in a particular field of interest, for example being gifted in mathematics, music, science, or art, as well as a strong ability to learn details and retain information for a long time
• A preference for doing things by themselves rather than group activities
• Higher level of sensitivity to and intolerance of physical sensations, noise, tastes, smells, pain and being more easily overwhelmed or overstimulated by sensory experiences that don’t bother others
• Repetitive behaviors like constant foot tapping or throat clearing
• Need for consistent routine and difficulty handling changes to those routines
• Difficulty staying organized and completing tasks
• Trouble regulating emotions, for example becoming angry or upset more easily or to a higher degree

Women are more likely to mask common ASD behaviors and have fewer issues with communication and social interactions, which can make getting a diagnose more challenging. They are also less likely to have been diagnosed in childhood because for many decades, autism was assumed to affect more males than females, so it wasn’t considered as an explanation for autism symptoms seen in girls.

Co-occurring conditions are common in adults with ASD. One meta-analysis found that among adults diagnosed with ASD:

• 28% had attention-deficit hyperactivity disorder
• 20% had an anxiety disorder
• 12% had disruptive/impulse-control/conduct disorders
• 11% had depression
• 9% had obsessive-compulsive disorder
• 5% had bipolar disorder
• 4% had a schizophrenia disorder

Getting a diagnosis

There are no medical tests for ASD for children or adults. If you think you may be living with ASD, talk with your primary care provider about your symptoms to rule out any underlying physical cause for your symptoms.

The diagnosis is made by a psychiatrist, psychologist, or neuropsychologist based on your own observations about your communication skills and sensory experiences, information gathered through a diagnostic assessment or screening interview with a mental health professional, and an in-person assessment with the provider.

Because adult diagnosis ASD is a relatively new field, there aren’t many mental health providers who specialize in assessing adults. You can start by contacting providers who diagnose children with ASD and ask if they also work with adults or if they know any colleagues who work with adults seeking an ASD diagnosis. Your PinnacleCare Health advisor can streamline the process and connect you with providers who have the skills and experience needed to perform an assessment. Your Health Advisor can also provide evidence-based information about ASD to help you understand the condition and the diagnostic process.

Questions to ask your provider

When you meet with a provider for an assessment, asking these questions can help you get an accurate diagnosis and understand the condition and its potential impact on your day-to-day life:

• What factors or symptoms suggest I have ASD? What factors suggest that it’s not ASD?
• If my symptoms don’t suggest ASD, what other condition could be causing the symptoms?
• How is the diagnosis confirmed or ruled out?
• Should I consider a second opinion?
• What types of symptoms should I be on the lookout for and what possible changes in these symptoms should I let you know about
• What approaches to support are available? What are the pros and cons of the approach you’re recommending?
• Are there support groups and resources with evidence-based information you’d recommend?

Get started with PinnacleCare

As a member of PinnacleCare, you get the support of a personal Health Advisor and a team of experts to provide you with the information necessary and get you access to the right specialists to get the right diagnosis and treatment plan for any health condition.

Connect with a PinnacleCare Relationship Manager today to see how we can support your health needs.