Autism: The challenges and opportunities of an adult diagnosis

It's estimated that about 2.2% of people over the age of 18 have autism spectrum disorder (ASD). New research suggests that diagnoses of adults are on the rise, with the greatest increase in diagnosis rates occurring among people ages 26 to 34. According to a study published in JAMA Network Open, the rate of diagnosis in this age group increased by 450% from 2011 to 2022.

Receiving an autism diagnosis in adulthood can be challenging. But it can also present areas of opportunity and support.

What is autism spectrum disorder (ASD)?

ASD is a neurological and developmental condition caused by differences in the brain. It affects how a person interacts with others, as well as communication, learning, and behavior. Autism can be diagnosed at any age, although symptoms usually appear before age 3.

People with ASD have a wide range of strengths, needs, abilities, and challenges. Some have a normal or even high IQ, and are able to work and live independently. Others may be nonverbal and require significant support. Abilities may also vary within an individual; for example, an autistic person may have a high IQ but experience major challenges with social interactions.

Symptoms of autism

There are many different symptoms of autism, and they vary from person to person. In general, people with autism have challenges in two main areas.

Social communication and interaction. People with ASD may find it hard to:

• hold a conversation
• share emotions
• understand what others think or feel
• make eye contact
• interpret body language
• regulate their tone of voice — they may speak too loudly, or in a monotone
• make friends
• manage social situations.

Restricted and repetitive behavior. These can include:

• Repetitive movements, speech, or play. This can take the form of repetitive body motions like rocking back and forth or flapping hands. (These behaviors can be a form of self-soothing.) Some people may repeat words or phrases, which is known as echolalia.
• Need for routine. Many people with ASD find comfort in a predictable daily schedule. Even small changes may be distressing.
• Intense, focused interest in specific topics, numbers, details, or facts.
• Sensory differences. Some people with ASD are unusually sensitive to light, sound, or temperature, while others may take little or no notice of them.

People with ASD also have many strengths. They may have an excellent memory and the ability to learn things in detail. They often do well in subjects like math, science, music, or art.

How autism symptoms in adults may be different than symptoms in children

Autism symptoms in adults are similar to those seen in children. But adults with ASD may have learned to suppress their autistic behaviors and characteristics. This is known as masking, and it can lead to stress, anxiety, depression, and other negative effects.

Many adults with ASD report that they feel awkward in social situations. They may prefer to be alone, and have trouble making friends. They may find it hard to understand what others think or feel, and to see things from their perspective.

Adults with ASD also prefer order and routine. Slight changes may stress them out or even make them angry. They may also have intense, specific interests.

These symptoms can wax and wane over time. They may worsen during times of stress or major life change, like going off to college, getting a new job, or getting married or divorced.

Adults with ASD may also be more likely to experience mental health conditions such as anxiety or depression. One study found that people who aren't diagnosed with ASD until adulthood are almost three times as likely to be diagnosed with a mood, anxiety, or personality disorder than those who were diagnosed in childhood.

Diagnosing autism in adults

It's likely that many adults with ASD were never formally diagnosed as children and still may not have a diagnosis. If you suspect that you or a loved one may be autistic, a neuropsychologist or a psychologist or psychiatrist who specializes in ASD is the best provider for a diagnosis.

There's no single test for autism. Instead, the clinician will take a thorough medical history, ask detailed questions, and perform various assessments. A combination of these, rather than a single test or tool, should be used to make an autism diagnosis.

Here's what to expect:

Questions about childhood. The clinician will want to know about the person's childhood. To get a full picture, they may want to speak with parents or siblings.

Questions about the present. The clinician will want to get a sense of the person's social and communication skills. They may ask about their job, interests, friendships, and relationships. They will also likely screen for conditions such as depression, anxiety, and ADHD, which often occur along with ASD.

Cognitive testing. The clinician will want to get a sense of the person's attention, memory, processing speed, reasoning, and problem-solving skills.

ASD assessment. The gold-standard test used during the diagnostic process is the Autism Diagnostic Observation Schedule (ADOS-2). In adults, the assessment typically consists of an hourlong interview, during which the clinician observes aspects of the individual's social behavior. This test requires training and certification to administer, but can still miss signs in adults who are good at masking symptoms. Another assessment is the Childhood Autism Rating Scale (CARS). Despite its name, this test is also validated in adults.

Challenges of an autism diagnosis

Getting an autism diagnosis as an adult can be challenging. Here are some obstacles you may encounter:

Few providers. There aren't many clinicians who diagnose and treat adults with autism. Your primary care physician may be able to provide a referral. Another option is to reach out to local autism centers to see if they diagnose and treat adults. Autism Speaks also has a referral guide to help find a local provider.

Cost. Providers charge anywhere from $2,000 to $6,000 for an evaluation, and not all of them take insurance. Always call ahead to find out what your health insurance plan covers. Some clinicians and centers offer sliding scale payments.

Time. It may take several months — even a year or more — to get an appointment.

Identity. Even if you've always suspected that you may be autistic, a formal diagnosis can challenge your perception of who you are. It can take time to adjust. A mental health professional can help you work through accepting your diagnosis.

How an autism diagnosis can help

There are also benefits to a later-in-life diagnosis of ASD.

Access to treatment

An ASD diagnosis can help individuals connect with therapists who may work on functional goals such as enhancing communication skills, building relationships, and regulating emotions. People with ASD are also four times more likely to experience depression during their lifetime compared to people without ASD, and therapy can help.

A type of therapy called cognitive behavioral therapy (CBT) can be used to address co-occuring anxiety, depression, and sleep problems, and can also help with everyday problem-solving. Autism Speaks has a resource guide to help identify local therapists.

There can also be a role for medications. While medications cannot cure ASD, certain supplements and prescription medications may help manage symptoms associated with the condition. For example, omega-3 fatty acid supplements may help with ASD-associated irritability. The following drug classes may also be prescribed to relieve other symptoms that occur in people with ASD:

• selective serotonin reuptake inhibitors (SSRIs) to reduce repetitive behaviors and decrease anxiety, depression, irritability, tantrums, and aggression
• antipsychotic drugs to reduce repetitive actions and minimize aggression
• stimulants to increase focus and decrease hyperactivity.

Other benefits

Other potential benefits of a later-in-life autism diagnosis include:

Self-acceptance. An ASD diagnosis can help explain why certain things, such as social interactions or bright lights, have always been a challenge. It can make a person feel empowered, and give them a better understanding of both their strengths and their challenges.

Access to services. An ASD diagnosis may help an adult get insurance coverage for (or at least access to) therapies for specific challenges — for example, occupational therapy to learn to better cope with sensory issues, or social skills groups where adults can practice communicating with others.

Better work protection. Under the Americans with Disabilities Act (ADA), adults with ASD have the right to reasonable accommodations at both work and school. That might mean using noise-canceling headphones at their desk, dimming the lights in their office, or access to assistive technologies to complete their work.

Community. Many social groups and support groups exist for people with ASD. You may welcome the opportunity to connect with others who share a similar life experience.

Strategies, support, and services after an autism diagnosis

There are many resources available after an adult receives an autism diagnosis.

Work assistance. People with ASD may find it hard to get and keep a job. They may be eligible for vocational rehabilitation (VR) services. A VR counselor can help identify solutions to challenges in the workplace. Those who are unable to work can apply for Supplemental Security Income (SSI), a monthly payment provided to people with disabilities with little to no income or resources.

Support groups. There are many online and in-person support groups and social events for adults with autism.

Individual or group coaching. Groups like the Association for Autism and Neurodiversity offer coaches who can work with adults with autism to help them improve their executive functioning and communication skills.