Seeking an Autism Diagnosis as an Adult: Pros and Cons

The Autism Diagnostic Process for Adults

If someone suspects that they may be autistic as an adult, they may wonder if they should pursue a formal autism diagnosis.  The are some pros and cons that people might consider and its important to know that getting diagnosed with autism as an adult is a different process than getting diagnosed as a child.

For adults, autism is diagnosed by psychologists, psychiatrists, or trained clinicians who specialize in Autism Spectrum Disorder (ASD).  As a first step, adults who think they may be autistic should start by making an appointment with their primary care physician to plan out next steps.  As a note, primary care physicians will probably begin this process by ruling out other conditions that could explain their patient’s concerns.  While this might be frustrating for the person seeking autism testing, it is a necessary first step in the diagnostic process.  Indeed, responsible primary care providers will want to make sure that the concerns their patient reports don’t have a simpler explanation.

Testing autism in adults is a complex process with no single test.  The diagnostic process will often span over multiple appointments with a clinician.  Dr. Catherine Lord, Ph.D., a clinical psychologist and member of the Autism Speaks Medical and Science Advisory Committee, reports that her diagnostic process for adults usually begins with talking to the patient about “what they are looking for and why they want the assessment.”  She then asks if the patient is comfortable with her getting information from someone who knew the patient as a child.  Because autism is a developmental disorder, it is important to get information about what the person seeking a diagnosis was like as a child.

After getting information about the person’s early life, testing may include a face-to-face assessment.  In adults, autism often includes executive functioning challenges, so testing may include some cognitive tasks.  Autism evaluation is most often done using the Autism Diagnostic Observation Schedule, second edition (ADOS-2), which is considered to be the gold-standard test for diagnosing of autism.  Diagnosing autism in adults will also likely include a social-emotional functioning interview and screening for depression, anxiety, and ADHD as these are common co-occurring conditions with autism.

Pros of Seeking an Autism Diagnosis as an Adult

Although some people may be hesitant about pursuing a possible Autism Spectrum Disorder (ASD) diagnosis, there are positives that may result from receiving a formal ASD diagnosis.

• Peace of mind. Many autistic adults go through life with a sense of “otherness” – they feel like they aren’t like other people and they don’t always know why.  Receiving a diagnosis can give you an explanation for that feeling.  It can be a positive to know that some of your behaviors are caused by autism.  Knowing that you have an autism diagnosis can allow you to focus on your strengths and plan to work through certain challenges.

• You could be eligible for accommodations and protection. The Americans with Disabilities Act (ADA) codified certain rights for people with disabilities into law. These rights include reasonable accommodation at work and school, such as the use of noise-cancelling headphones and access to assistive technologies. Also, the ADA provides protection from discrimination against difficulties associated with autism.

• You could be provided vocational support services from the state. By receiving a formal autism diagnosis, you could have access to state-provided services, such as vocational rehabilitation programs that provide counseling for those with autism.  Those services also aid with job placement for people with disabilities, including autism.

• You can connect with other autistic adults. There are a variety of social groups and support groups for autistic people. Receiving a diagnosis could give you the opportunity to join these groups and connect with people who share similar life experiences.

• You can gain access to treatment. An autism diagnosis can help patients connect with therapists who specialize in enhancing functional abilities such as communication skills, building relationships, and regulating emotions.

• You can categorize yourself. Autistic people may have trouble explaining their behaviors, needs, and preferences to other people.  Those questions can become burdensome. Obtaining a formal autism diagnosis can give autistic adults an easy way to explain their needs to others, therefore relieving some social stress.

Cons of Seeking an Autism Diagnosis as an Adult

Receiving a formal autism diagnosis can open doors for some adults, but there may also be some negatives.

• There are few providers. There are not very many clinicians who specialize in diagnosing or treating autism in adults. Getting an autism diagnosis as an adult may require a primary care physician to make a referral, which could be a long and drawn out process.

• Evaluation and diagnosis come with a cost. Providers can charge anywhere from $2,000 to $6,000 for an evaluation and not all providers take insurance. Therefore, it is important to call ahead to find out whether the provider takes your insurance and if your insurance covers autism testing.

• A diagnosis takes times. Depending on availability in your area, it can take several months to over year to receive an appointment.

• Adapting to a new identity. Although you may have always thought that you were autistic, a formal diagnosis can change in how you think about yourself and how other people think about you.  Some people don’t like the autism label because other people may have misconceptions about autism and what autistic people can do.

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