It’s Possible to Be Diagnosed With Autism as an Adult

Clinicians are meeting more and more adult patients who think they "have autism"—but were not diagnosed as children. This apparent increased frequency of adults presenting with self-diagnosed autism makes sense, given increased public information about and acceptance of autism—both good things.

Some clinicians may believe that self-diagnosing adults do not or even could not actually "have autism" if they were not diagnosed as children. They may see these patients as seeking explanations for life-long social, school, and work difficulties or a positive identity and sense of belonging after years of experiencing themselves as shamefully different. These are positive functions of receiving a diagnosis, yes, but not the same as actually being autistic.

These clinicians, especially those who work primarily with adults and may not have had specialized training and experience in neuro-developmental disorders, may not realize that it is indeed possible, and more likely than they may think in some cases, for adults to present with undiagnosed autism.

Some new(er) ways of thinking about autism

Most clinicians are aware of the classic autism diagnostic criteria of "persistent deficits of social communication and interaction" and "restricted, repetitive patterns of behavior, interests, or activities," versions of which are found in multiple editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM), including the most recent the DSM-5.

When meeting with adults who have not yet been, but could be, diagnosed with autism, I find it helpful to keep in mind three relatively new ways of thinking about autism included in the DSM-5: masked by learned strategies later in life, may not become fully manifest until social demands exceed limited capacities require support versus substantial support versus very substantial support.

It may be masked by learned strategies later in life. It may not become fully manifest until social demands exceed limited capacities, which now qualifies the symptoms must be present in the early developmental period criteria of prior editions of the DSM. This way of thinking helps explain many of the "I think I have autism" adults that show up in a general psychology practice.

These adults may have mostly managed but are encountering social (or work, or school) situations that "exceed their capacities" or may have been struggling but using learned strategies (and much effort) to "mask" their struggles through much of their lives. This may be especially true of bright and highly motivated people and those who have had much family support.

"Masking" is a term embraced by many adolescents and adults in my practice diagnosed with autism as capturing their experience of, often creatively and heroically, working all day long, day after day, to integrate to present as "typical' and integrate themselves into the "neurotypical word."

Requires support versus requires substantial support versus requires very substantial support are the current (DSM-5) autism severity descriptors. These remind us to think in terms of dimensions rather than categories and build on the historic shift in how psychologists think about autism: from (pre-1970s) low- or non-verbal individuals struggling with daily life activities to including verbal, even highly verbal, people who may be very engaged in social, educational, and work settings. This particular phrasing (requires support) also reminds us to incorporate environment (including presence or lack of accommodations) and person-environment fit into our assessment and treatment planning, not just focus on the individual and their "deficits."

Ethnicity Matters

It is important to note that people of color, for example, and especially Black Americans, exhibiting signs of autism tend to be underdiagnosed as children. Data suggests that pediatricians and other health care professionals tend to see signs and symptoms of autism presented by Black children as "behavioral" or due to "poor parenting." These underdiagnosed children may then present as undiagnosed adults (Durkin et al., 2017).

Black parents, in light of the long history of mis- and maltreatment of Black people by the medical system, may also be especially mistrustful of health care providers and thus not seek or be open to autism evaluations and diagnoses. Parents from many ethnic groups, including Black parents, may be especially wary of their child being labeled as "defective" or "different." A diagnosis could mean lower academic expectations or be seen as shameful in their extended family or community.

Autism Essential Reads

Reducing Meltdowns in Children With Autism Spectrum

5 Reasons Why Girls' Autism Symptoms Are Often Missed

In other words, parents sometimes work to "mask" their child's neurodevelopmental differences until "demands exceed capacity" or demands exceed capacity enough to require intervention—which may not be until adulthood.

Recommendations for Practitioners

Be open to the possibility that an adult patient presenting with self-diagnosed autism may meet diagnostic criteria for autism but have been "masking." Keep in mind that adult patients may embrace this kind of diagnosis because of actual benefits (e.g., reduced shame and isolation, positive identity, obtaining workplace accommodations and supports) and that they may actually "have" autism. When considering differential diagnoses, perhaps use a standardized assessment instrument (such as the autism diagnostic interview (ADI-R) or refer for a neuropsychological evaluation.

Remember that ethnicity sometimes influences how parents and families interact with the healthcare system—and how the education and healthcare systems interact with families. Review the summary guidelines for assessment and intervention with persons with disabilities recently published by the American Psychological Association (Hanson et al., 2023).