What To Know About Diagnosing Autism In Adults

Language note: Although individual preferences exist, surveys of the autistic community consistently show that autistic people prefer identity-first language rather than person-first language (i.e., “autistic person” rather than “person with autism”). This article reflects that community language preference.

Although autism is a lifelong neurodevelopmental difference typically diagnosed in childhood. Many people are not diagnosed in childhood, however, and may seek an evaluation as adults. This article discusses what an autism evaluation can look like for adults who suspect they may be on the autism spectrum and were never diagnosed as children.

Signs of Autism in Adults

Even though autism is lifelong, and autistic people do not “grow out of” autism or stop being autistic, much of the existing autism assessment research focuses on the presentation and experiences of young children.

Historically, research typically highlighted the presentation of White male children, and as a result, other populations (non-White boys and men, girls and women of all races, as well as nonbinary, transgender, and BIPOC individuals) are often diagnosed later in life.

• Special interests: Autistic adults might find that their interests and hobbies are not similar to those of their peers. They may experience sensory issues, such as being more bothered by light or sound, that other adults seem not to notice.
• Stimming Autistic adults can engage in repetitive behaviors (known as stims), though they have often learned to stim in a way that the people around them will not notice. This can include thinking of a phrase repeatedly, listening to the same song over and over, making repeat noises, or using fidget items like spinners or cubes.
• Consistent needs: Sensory, social, and behavioral needs tend to remain consistent for autistic people throughout their lifetime, even if presentation changes somewhat due to masking.
• High risk for mental illness: Autistic adults are at higher risk than neurotypical people for various mental health issues as well. This occurs as a result of the stress of being held to neurotypical standards for behavior when this does not come naturally to the autistic person. This stress can lead to feeling burnt out, mood disorders, substance use disorders, and even suicide.
  

Types of Autism Evaluations for Adults

Many existing autism assessments focus on the experience of young children, and limited options are available for adults. However, providers can evaluate for autism in adults using certain measures, including:

• Autism Diagnostic Observation Schedule, Second Edition (ADOS-2): This measure involves presenting an individual with tasks and observing whether their behavior and responses are similar to autistic individuals. Some subtests on the ADOS-2 can be administered to adults.
• Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition (MIGDAS-2): This guided interview queries for communication style, relationships, emotional responses, and sensory sensitivity to determine whether the individual’s symptoms meet the criteria for autism.
• Personality Assessments: An evaluator may use personality measures to gather information about how an individual perceives the world around them, approaches social relationships, or exhibits symptoms of a mental illness that may be comorbid with autism.
• Diagnostic Interview: The evaluator can conduct a thorough interview of the individual’s symptoms and history, including information about early childhood and development.
• Collateral Interviews: Some providers may ask to interview a parent or family member for information about the client’s early development and behaviors. This particular component is not always used, as some people might not be able to have a parent participate in their assessment.

How to Get an Autism Evaluation as an Adult

If you think you might be autistic, you may decide to pursue an evaluation. It can be difficult to know where to start. Many therapist directories allow users to filter by service and expertise, so you can filter results and find someone who is qualified to diagnose autism.

You can also speak to your primary doctor or general practitioner, who likely has information about providers they can refer you to. Usually, a provider needs specific credentials and training to be able to assess for and diagnose autism. Often psychologists or psychiatrists have the qualifications to diagnose autism, but not every provider has the necessary training.

If you are reaching out to providers to get an autism evaluation, ask if this is a service they provide. Be specific that you want to be evaluated for autism. Many clinics can provide a referral if they are unable to provide the service you need.

Risks of Getting Evaluated for Autism as an Adult

An autism evaluation can help you better understand how your brain works, communicate your needs, and access appropriate support. Many adults pursue autism evaluations for these reasons.

However, there are also drawbacks to seeking an evaluation. Some insurance plans will not cover the cost of an evaluation, and even when insurance allows for testing, many providers do not accept insurance. An autism evaluation can cost thousands of dollars, which is not affordable for many.

In addition to the high cost of testing, many autistic people are misdiagnosed or told that they do not meet the criteria even though they are later identified as autistic. One study showed that as many as two-thirds of autistic people are initially misdiagnosed before receiving their autism diagnosis.

This occurs because the diagnostic criteria for autism do not fully encompass the varied experiences of autistic people and do not account for masking that might cause an autistic person to appear neurotypical in an evaluation. This means that the individual has possibly spent a significant amount of money and is still not diagnosed.

Users reported discrimination in healthcare, including being involuntarily given Do Not Resuscitate orders at hospitals, being denied care because they were not considered competent to make their own medical decisions, or being denied organ transplants. They also reported being denied applications to foster, adopt, or immigrate to other countries.

Because of these risks, many adults choose to self-identify rather than seek a formal diagnosis.

Support for Autistic Adults

Whether you have self-identified autistic traits or been formally evaluated, community support can help you better understand and advocate for your needs. These organizations are run by and for autistic people:

• The Autistic Self-Advocacy Network
• Autistic Women & Nonbinary Network
• NeuroClastic

If you think an evaluation is right for you, you can find a diagnostician in your area. These directories offer neurodiversity-affirming care:

• Asperger/Autism Network
• Neurodivergent Therapists