The Barriers to an Adult Diagnosis of Autism

Autism The Barriers to an Adult Diagnosis of Autism It can be hard to get diagnosed as an adult; self-diagnosis is a valid choice. Posted November 25, 2023 | Reviewed by Ray Parker Key points Many autistic adults, particularly women and highly intelligent individuals, were undiagnosed as children. There are four main barriers to getting an autism diagnosis as an adult, including finding a doctor. The others are affording the cost, finding an informant, and overcoming the tendency to mask autistic traits. In 2020, I received a diagnosis of autism spectrum disorder (“ASD” or “autism”). As an autistic adult whose diagnosis of autism was missed when I was a child, I am part of what autism researchers call the “lost generation” of adults with autism. Undiagnosed autistic girls and highly intelligent children make up a “lost generation.” Many of this lost generation are girls. In girls, diagnoses were (and still are) missed because girls’ presentation of autism may differ from the “traditional” presentation in boys. For example, girls show autistic special interests, but theirs might be in people or animals. Researchers give examples of music groups and horses—my own special interest as a child. Boys, on the other hand, tend to gravitate toward objects such as models or Lego. Furthermore, research shows that girls tend to camouflage, or “mask,” their autistic traits more than boys. Diagnoses were also missed if a child was highly verbal, did well in school, or generally was gifted, what we call “twice exceptional” today—and these characteristics cross gender lines. If your autism diagnosis was missed as a child, you might want to seek a diagnosis as an adult. Many, if not most, adults who are eventually diagnosed with autism feel a sense of relief and a positive change in their identity. An adult diagnosis can positively change a person’s sense of self. I know mine did. I no longer feel as isolated or as though I were “made wrong.” But, there are many challenges to getting a formal diagnosis. The first barrier is finding a doctor. When I went through the diagnosis process for autism, I faced a number of challenges, challenges that researchers identify as part of the problem with helping the lost generation. Because autism is a “developmental disorder,” diagnosis focuses on children. Therefore, it is difficult to find a doctor who will diagnose an adult. Doctors turn away adults seeking diagnoses; some doctors help them but don’t give formal diagnoses, only “probable” diagnoses. I’m lucky that where I live, we have the TEACCH Autism Program, part of the University of North Carolina Medical Center. I called them on the phone and asked to be diagnosed. I was put on the waitlist, and a few weeks later, they called me to set up an appointment. The second barrier is cost. Significantly, the TEACCH Center accepted my insurance. Therefore, I did not have to pay thousands of dollars out of pocket for my formal diagnosis. Typically, the cost of obtaining a diagnosis without insurance, whether you are a child or an adult, is thousands of dollars. Many, if not most, psychologists who do diagnostic testing do not take insurance. The third barrier is finding an informant. As part of the diagnostic process, I had to bring an adult who knew me as a child and could witness my behavior both as a child and as an adult. This person also needed to fill out questionnaires. I’m lucky I have an aunt who lives near me and agrees to do this work. As autism experts Meng-Chuan Lai and Simon Baron-Cohen explain, as part of the adult diagnostic process, “Interviewing informants who can provide reliable and valid information about the patient’s developmental history is essential to confirm a diagnosis.” Lai and Cohen recognize that finding informants for adults can be challenging since these informants may be out of a person’s life or even dead, or they might not remember things accurately after the long passage of time. The fourth barrier is that autistic adults learn to mask. When it was time to start my testing, I was surprised to find that the doctor was caring and supportive. Her demeanor helped me relax, which was important for the testing experience. In retrospect, I realize that I would have masked the entire time if she hadn’t put me into a safe mental space. I didn’t know the word “masking” at the time, but I knew that I did it—I suppressed my autistic traits around people whom I didn’t know or didn’t feel safe around. But I also knew that I wouldn’t be able to give the doctor an accurate picture of myself if I did so. Researchers know that formal testing today struggles to detect autism in adults in part because adults, especially women, have learned to mask so well. The most well-regarded test for autism, the Autism Diagnostic Observation Schedule (ADOS), can fail to pick up on autistic traits that adults unconsciously mask, leading to missed diagnoses. Self-diagnosis is a valid option. After I was diagnosed with autism and shared my diagnosis through my writing, colleagues and strangers alike approached me with a simple question: They believed they were autistic; some had taken online autism screening tests that diagnosed them as autistic. Yet they felt like imposters. Were they really autistic? Given all of the barriers to formal diagnoses and the many high-quality screening resources available online—many of the same screening tools that doctors use—self-diagnoses might seem like a valid option. And—it is. Indeed, researchers have now found that self-diagnosed and formally diagnosed autistic people share similar qualities across a variety of fronts. If you are unable to get formally tested but find yourself meeting the criteria for autism, then you are autistic. References Galliver, Mark, Emma Gowling, William Farr, Aaron Gain, and Ian Male. “Cost of Assessing a Child for Possible Autism Spectrum Disorder? An Observational Study of Current Practice in Child Development Centres in the UK.” BMJ Paediatrics Open 1, no. 1 (November 30, 2017): e000052. https://doi.org/10.1136/bmjpo-2017-000052. Kalb, Luther G., Vini Singh, Ji Su Hong, Calliope Holingue, Natasha N. Ludwig, Danika Pfeiffer, Rachel Reetzke, Alden L. Gross, and Rebecca Landa. “Analysis of Race and Sex Bias in the Autism Diagnostic Observation Schedule (ADOS-2).” JAMA Network Open 5, no. 4 (April 26, 2022): e229498. https://doi.org/10.1001/jamanetworkopen.2022.9498. Lai, Meng-Chuan, and Simon Baron-Cohen. “Identifying the Lost Generation of Adults with Autism Spectrum Conditions.” The Lancet Psychiatry 2, no. 11 (November 1, 2015): 1013–27. https://doi.org/10.1016/S2215-0366(15)00277-1. McDonald, T.A.M. “Autism Identity and the ‘Lost Generation’: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum.” Autism in Adulthood: Challenges and Management 2, no. 1 (March 1, 2020): 13–23. https://doi.org/10.1089/aut.2019.0069.

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