Suddenly on the Spectrum: Discovering Autism as an Adult

Autism is one of the most common neurodevelopmental disorders. The Centers for Disease Control and Prevention (CDC) estimates that there are about 5,437,988 adults with autism spectrum disorder (ASD) in the United States. That’s about 2.21% of the adult population. Gender distribution in adults mirrors the ratios in children: about 3.62% of adult males live with ASD, while .86% of women are affected.

In recent years, there has been a surge of adults seeking a diagnosis, as they recognize some of the same characteristics in themselves that led to a diagnosis of ASD in their child.

Receiving a diagnosis later in life can be helpful to an adult for many reasons, such as providing access to services and support not previously available to them. Many adults, however, have learned to function with the symptoms, making diagnosis more difficult.

Social behaviors

Some types of social interaction and communication are difficult for virtually all adults with autism spectrum disorder. More specifically, some of the symptoms include:

• Discomfort with eye contact
• Difficulty with conversation
• Difficulty with forming or maintaining close relationships
• Difficulty understanding idioms or sarcasm
• Difficulty regulating emotions
• Difficulty reading the emotions, body language, or facial expressions of others
• Social anxiety

Repetitive or restrictive behaviors

Many adults with ASD have patterns of thought or behaviors that are inflexible or repetitive, such as:

• Extreme reliance on daily routines, which are difficult to change
• Needing to arrange items in a specific order
• Making involuntary noises, such as repetitive throat-clearing

Interests or activities

Adults with ASD may have extreme interest in a particular topic, which they’ll talk about obsessively. They may:

• Have few or limited interests
• Prefer solo activity
• Have a particular field in which they excel, such as mathematics
• Be primarily visual or auditory learners, often in extreme detail with long memory for detail

Gender differences in autism

Autistic women may manage social interactions better than autistic men, because women’s signs and symptoms may be more subtle or more-effectively masked. The women may be quieter, hide their feelings more effectively, or have developed more effective communication skills.

Diagnosis

Some tests have been developed to diagnose autism in adults, the most effective of which is the ADOS-2. Even this test, however, may have limited reliability, because

• Studies have had small numbers of participants
• Research has often not included underserved groups, such as people of color
• Clinicians may not be familiar with the signs of ASD in adults, especially when signs are subtle

Adults seeking a diagnosis (a family member or friend may suggest seeking care) should discuss the possibility with their primary care provider, who should:

• Explore symptoms, as both a child and an adult
• Observe and interact with the patient
• Speak to a person close to the patient (with the patient’s permission)
• Investigate other potential diagnoses

If no other disorder is identified, the patient should be referred to a psychiatrist or psychologist skilled in autism in adults for potential diagnosis. No symptoms as a child or adolescent suggests a diagnosis other than ASD. A child psychiatrist with expertise in autism may be willing to see an adult.

It’s important to respect the preferences of an adult who may not want to pursue a diagnosis. There are potential benefits, however, for the individual who receives a diagnosis:

• It may provide an explanation for the autistic individual’s difficulties with managing socially
• It may help others’ understanding of ASD and the affected individual
• It may allow access to services and benefits in the workplace

Living with Autism

Living with autism may be difficult for some adults. Each individual and their care are unique.

Some autistic adults are highly intelligent, with strong memories and an ability to “think outside the box.” They are often observant and resilient, with a strong sense of fairness and “right.” ASD is often a part of their identity and doesn’t require support. Those who do need more support may benefit from:

• Education about their condition
• Therapy for co-occurring conditions, such as anxiety or depression. This may include counseling and treatment, such as cognitive behavioral therapy
• Vocational rehabilitation for autistic people with career challenges
• Neurodiversity may or may not be supported in the workplace. One resource for issues about the workplace is the Employer Assistance and Resource Network on Disability Inclusion
• Peer support. There are online groups and forums, and face-to-face groups. Research shows that access to autistic peers can favorably benefit an autistic person’s life
• Medication. Some prescription medications can relieve symptoms associated with ASD, depression, and anxiety

Adults who suspect that they may be autistic and want to pursue a diagnosis can speak with their doctor to start the diagnostic process. As awareness of ASD in adulthood increases, finding appropriate medical care and support services should become easier.