“Autistic people are always autistic,” says Sharon Kaye-O’Connor, LCSW, an autistic psychotherapist who was diagnosed with autism in adulthood. “We are born autistic, but our autistic traits may not become more apparent or recognizable until later in life. It’s especially common for autistic girls, women, or non-binary folks to go undiagnosed, or misdiagnosed, until well into adulthood. The diagnostic criteria for autism are still largely based on how autism has been observed to present in boys, so anyone who falls outside of these stereotypes can easily go undiagnosed for decades.” Although it is more common for autism to be identified earlier in life, as Allison Lobel, Psy.D., Clinical Psychologist and Director of Child and Adolescent Services at Wellington Counseling Group points out, she agrees that signs of autism sometimes do not become clear until adulthood. “This is largely due to the transition away from the built-in structure, routines and supports that inevitably become part of family and school experiences,” she says. “While a child may exhibit some concerns during the formative years, teachers and/or caregivers may learn to accommodate the child, which can naturally mitigate underlying developmental concerns.” But what exactly is autism? And what are the symptoms that present in adults?
What Is Autism?
As Kaye-O’Connor puts it, autism is a neurodevelopmental difference. “Autism is a different way of perceiving, processing and interacting with our environments,” she elaborates, likening ASD to a computer operating system. “Some computers run on Windows while others run on Mac operating systems,” she says. “Neither operating system is wrong—they just work differently. Through the lens of neurodiversity, autism is viewed as a different neurotype. We are simply wired differently.” Dr. Lobel adds that autism impacts what she calls “developmental trajectory,” which includes communication, behavior, social interactions and emotional regulation. “The manifestation of autism can vary greatly between individuals, contributing to a range of severity,” she says. It should be noted that autism is not necessarily considered a mental health condition. Dr. Lobel says that while autism can impact developmental domains, an autistic person can have stable mental health, just like anyone else. “However, autism does have a higher prevalence rate of co-occurring mental health concerns, such as depression, anxiety, obsessive-compulsive disorder (OCD) and eating disorders,” she says. “Autistics may be more vulnerable to mental health concerns such as depression and anxiety due to the awareness of feeling different from peers and not fitting in with social expectations.” Even though children and autism are often linked together by those who don’t have the disorder, it’s still something that presents in adults. Adults simply may experience milder symptoms than children, since “adults may be better at masking some of the signs of autism if they have lived with symptoms for years without a diagnosis or support,” Dr. Lobel says. Autism is understood to be largely genetic, Kaye-O’Connor shares, and it’s not uncommon to see autism diagnosed throughout families. In fact, autistic parents often have autistic children.
Top Signs of Autism in Adults
“Autistic traits can change and evolve and present to varying degrees throughout the lifespan,” Kaye-O’Connor says. “There isn’t really such a thing as ‘child autism’ or ‘adult autism’—it’s all just autism. Some autistic people learn to mask or camouflage their autistic traits through the years.” With traits that can ebb and flow over time, here are some of the top signs of autism, according to both experts:
Difficulty establishing and maintaining social relationships Difficulty recognizing and interpreting non-verbal cues in others, such as facial expressions and body language Difficulty maintaining back-and-forth (reciprocal) conversation, as opposed to one-sided, person-centered communication Difficulty understanding what others are thinking and feeling Difficulty maintaining eye contactInflexible or rigid thought patterns Repetitive behaviorsHaving highly-focused interestsSensory sensitivity, especially during times of stress or overwhelmImitation of mannerisms and speech patterns of others, done unconsciously or intentionally as a way to mask or blend in
How Is Autism Diagnosed in Adults?
A period that Kaye-O’Connor calls “autistic burnout” is commonly a time when many autistic adults finally receive a diagnosis. “Autistic burnout happens when the demands of our lives become too much,” she says. “It is a time when there may be a loss of skill or function, and everyday tasks can feel overwhelming or insurmountable. Autistic burnout is when someone might seem ‘more autistic,’ or when autistic traits become more apparent. This can happen at any stage of life and often occurs during times of major changes, transitions or stress.” As for moving forward with attaining a diagnosis, Dr. Lobel says that getting diagnosed by a professional is critical, rather than turning to the opinions of loved ones or unreliable surveys on the internet. “Locating a psychologist or neuropsychologist that completes a comprehensive evaluation is an important part of the diagnostic process and one that includes a clinical interview, specific autism rating scales, and the administration of the Autism Diagnostic Observation Schedule, 2nd edition, Module 4 (ADOS-2),” she explains. “Consulting with one’s insurance provider or primary physician for referrals can be a good place to start. Though it can be hard to find a psychologist that solely focuses on assessing and treating adults suspected of having autism, look for pediatric psychologists in your area that are trained and experienced to conduct autism evaluations, as they have the expertise to understand how autism affects the lifespan.” Kaye-O’Connor calls receiving an autism diagnosis as an adult “an incredible relief” and “a way forward to gaining greater insight into one’s own unique strengths, challenges, and characteristics.”
How Is Autism Treated?
It can be helpful to meet with a psychiatrist or psychologist who specializes in ASD, and there are medication options as well, which you can talk about with your doctor. Support groups are an excellent option, as they help participants with ASD feel less alone and learn new, innovative ways to deal with challenges in their everyday lives. “Connecting to others within the autistic community can be a wonderful way to better understand oneself and to connect with those who may also share similar life experiences,” Kaye-O’Connor says.
How Does Autism Affect Daily Life?
Those who have been diagnosed with ASD may often find that the world wasn’t really created with their needs, strengths or challenges in mind, as Kaye-O’Connor puts it. “We live in a world that was largely created to center around neurotypical needs,” she says. This means that those with autism can frequently come across a lack of acceptance and major sensory hurdles. “Sensory concerns can also be a big challenge for autistic people of any age, and it can be so incredibly helpful to have an understanding of our unique sensory profiles so we can then accommodate our sensory needs,” Kaye-O’Connor says. “What are the sensory adaptations and accommodations we need to do well at school, at work, at home, and out in the community?” Since autism falls along a spectrum, “so too does the impact on one’s function,” Dr. Lobel says, adding that depending on the severity, the capacity to live a fully independent life can be hindered. “Adults may need varying levels of support including, but not limited to, workplace accommodations and/or some assistance to manage finances, grocery shopping and laundry,” Dr. Lobel says. On the other hand, Kaye-O’Connor notes that autism can bring about “some really wonderful strengths and gifts.” “Some autistic folks have phenomenal memories, musical ability, perfect pitch or artistic ability,” she says. “Some autistic people have hyper-empathy and make excellent counselors, nurses, doctors, teachers or other caring professionals. Autistic people can have excellent pattern recognition and the ability to understand systems.” At the end of the day, Dr. Lobel stresses that having a diagnosis of autism, even during adulthood, is not a foregone conclusion of gloom and doom. “Rather, gaining clarity about one’s functioning, particularly in the social and emotional domains, can be a source of personal insight and empowerment to learn how to advocate for oneself,” she says. Next up, read about artist Morgan Harper Nichols’ autism diagnosis at age 31.
Sources
Sharon Kaye-O’Connor, LCSW, an autistic psychotherapist who was diagnosed with autism in adulthood. Allison Lobel, Psy.D., Clinical Psychologist and Director of Child and Adolescent Services at Wellington Counseling Group.Centers for Disease Control and Prevention: “Key Findings: CDC Releases First Estimates of the Number of Adults Living with Autism Spectrum Disorder in the United States”
