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

Althoughautismis 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.

Caregiving for an Autistic Person

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.

Pathological Demand Avoidance in Autism and Beyond

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:

How to Get an Autism Evaluation as an Adult

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. Oftenpsychologists or psychiatristshave 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.

Living With Autism Spectrum Disorder

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. Someinsurance planswill 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 initiallymisdiagnosedbefore 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 formaskingthat 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.

Even if someone is accurately diagnosed with autism, they might experience discrimination as a result of their diagnosis. Twitter userGummiPiesconducted an informal survey of autistic people’s experience of discrimination post-diagnosis.

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.

More Women Are Getting Diagnosed With Autism Than Ever Before

Support for Autistic Adults

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

As an Autistic Psychologist, Here Are My Thoughts on Autism and Self-Diagnosis

5 SourcesVerywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Simonoff E, Kent R, Stringer D, et al.Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort.Journal of the American Academy of Child & Adolescent Psychiatry. 2020;59(12):1342-1352. doi:10.1016/j.jaac.2019.11.020Dell’Osso L, Carpita B, Muti D, et al.Mood symptoms and suicidality across the autism spectrum.Comprehensive Psychiatry. 2019;91:34-38. doi:10.1016/j.comppsych.2019.03.004Lord C, Rutter M, DiLavore PC, et al.Autism Diagnostic Observation Schedule, Second Edition. WPS Publishing, 2012.Monteiro MJ, Stegall S.Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition. WPS Publishing, 2018.Fusar-Poli L, Brondino N, Politi P, Aguglia E.Missed diagnoses and misdiagnoses of adults with autism spectrum disorder.Eur Arch Psychiatry Clin Neurosci. 2022;272(2):187-198. doi:10.1007/s00406-020-01189-w

5 Sources

Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Simonoff E, Kent R, Stringer D, et al.Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort.Journal of the American Academy of Child & Adolescent Psychiatry. 2020;59(12):1342-1352. doi:10.1016/j.jaac.2019.11.020Dell’Osso L, Carpita B, Muti D, et al.Mood symptoms and suicidality across the autism spectrum.Comprehensive Psychiatry. 2019;91:34-38. doi:10.1016/j.comppsych.2019.03.004Lord C, Rutter M, DiLavore PC, et al.Autism Diagnostic Observation Schedule, Second Edition. WPS Publishing, 2012.Monteiro MJ, Stegall S.Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition. WPS Publishing, 2018.Fusar-Poli L, Brondino N, Politi P, Aguglia E.Missed diagnoses and misdiagnoses of adults with autism spectrum disorder.Eur Arch Psychiatry Clin Neurosci. 2022;272(2):187-198. doi:10.1007/s00406-020-01189-w

Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

Simonoff E, Kent R, Stringer D, et al.Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort.Journal of the American Academy of Child & Adolescent Psychiatry. 2020;59(12):1342-1352. doi:10.1016/j.jaac.2019.11.020Dell’Osso L, Carpita B, Muti D, et al.Mood symptoms and suicidality across the autism spectrum.Comprehensive Psychiatry. 2019;91:34-38. doi:10.1016/j.comppsych.2019.03.004Lord C, Rutter M, DiLavore PC, et al.Autism Diagnostic Observation Schedule, Second Edition. WPS Publishing, 2012.Monteiro MJ, Stegall S.Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition. WPS Publishing, 2018.Fusar-Poli L, Brondino N, Politi P, Aguglia E.Missed diagnoses and misdiagnoses of adults with autism spectrum disorder.Eur Arch Psychiatry Clin Neurosci. 2022;272(2):187-198. doi:10.1007/s00406-020-01189-w

Simonoff E, Kent R, Stringer D, et al.Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort.Journal of the American Academy of Child & Adolescent Psychiatry. 2020;59(12):1342-1352. doi:10.1016/j.jaac.2019.11.020

Dell’Osso L, Carpita B, Muti D, et al.Mood symptoms and suicidality across the autism spectrum.Comprehensive Psychiatry. 2019;91:34-38. doi:10.1016/j.comppsych.2019.03.004

Lord C, Rutter M, DiLavore PC, et al.Autism Diagnostic Observation Schedule, Second Edition. WPS Publishing, 2012.

Monteiro MJ, Stegall S.Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition. WPS Publishing, 2018.

Fusar-Poli L, Brondino N, Politi P, Aguglia E.Missed diagnoses and misdiagnoses of adults with autism spectrum disorder.Eur Arch Psychiatry Clin Neurosci. 2022;272(2):187-198. doi:10.1007/s00406-020-01189-w

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