Seeking an Autism Diagnosis as an Adult: Pros and Cons

Autism Diagnosis for Adults

If an adult thinks they might be autistic, they may wonder if they should get a formal autism diagnosis.  There are both pros and cons to consider, and it’s important to know that the process for adults is different from how children are diagnosed.

For adults, autism is diagnosed by psychologists, psychiatrists, or trained specialists in Autism Spectrum Disorder (ASD).  The first step is usually making an appointment with a primary care doctor to plan the next steps.  Primary care doctors often start by ruling out other conditions that could explain the person’s concerns.  This may feel frustrating, but it’s an important part of the process.  Doctors need to make sure there isn’t a simpler explanation before moving forward.

Testing for autism in adults is complex and doesn’t involve a single test.  The process usually takes several appointments.  Dr. Catherine Lord, Ph.D., a psychologist and member of the Autism Speaks Medical and Science Advisory Committee, explains that her process begins by asking the patient what they want from the assessment.  She also asks if she can gather information from someone who knew the patient as a child.  Because autism is a developmental condition, it’s important to understand what the person was like growing up.

After collecting background information, testing may include an in-person assessment.  Since autistic adults often have executive functioning challenges, testing may involve problem-solving or cognitive tasks.  The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) is often used, and it is considered the “gold standard” for diagnosing autism.  The process may also include interviews about social and emotional functioning and screenings for conditions like depression, anxiety, or ADHD, which are common alongside autism.

Pros of Seeking an Autism Diagnosis as an Adult

Although some adults may feel unsure about getting tested for autism, there are many benefits of receiving a formal diagnosis:

• Peace of mind. Many autistic adults feel “different” without knowing why.  A diagnosis can help explain that feeling and allow a person to focus on their strengths while planning for challenges.
• Accommodations and protection. The Americans with Disabilities Act (ADA) gives people with disabilities certain rights, such as accommodations at work or school (like noise-cancelling headphones or assistive technology).  The ADA also protects against discrimination.
• Vocational support services. With a diagnosis, adults may gain access to state programs that provide counseling, job placement, and support for people with autism.
• Social and support groups. A diagnosis can make it easier to connect with other autistic adults through community groups and share experiences.
• Access to treatment. An autism diagnosis can help connect adults to therapists who specialize in communication, relationships, and emotional regulation.
• Clearer self-understanding. Some autistic people find it hard to explain their needs to others.  Having a diagnosis can make it easier to explain behaviors or preferences, reducing stress in social situations.

Cons of Seeking an Autism Diagnosis as an Adult

While a diagnosis can open doors, there are also challenges to consider:

• Few providers. Not many professionals specialize in diagnosing autism in adults.  Getting a referral from a primary care doctor may take time.
• Cost of evaluation. An adult autism evaluation can cost between $2,000 and $6,000, and not all providers accept insurance.  It’s important to check with providers about coverage before scheduling.
• Long wait times. Depending on where you live, it may take months or even over a year to get an appointment.
• Adjusting to a new identity. Even if someone has always suspected they are autistic, a formal diagnosis can change how they see themselves and how others see them.  Some people may struggle with the label because of stereotypes or misunderstandings about autism.

Article by: EmilieAnne Misamore and The Autism Toolkit

Sources:
https://www.autismspeaks.org/blog/what-expect-when-getting-adult-asd-diagnosis
https://www.autismspeaks.org/adult-autism-diagnosis
https://www.health.harvard.edu/mind-and-mood/autism-the-challenges-and-opportunities-of-an-adult-diagnosis