About 1.5 percent of U.S. adults — or about 4.8 million people — are believed to have autism spectrum disorder, with many attempting to self-diagnose.
A new study in the journal Archives of Psychiatric Nursing explores the experiences of this often-ignored population to help adults struggling with the neurodevelopmental disorder — and to help health care workers identify adults with ASD before they become depressed or harm themselves.
“Health care professionals must have an understanding of self-diagnosis to help individuals transition to formal diagnosis and to adequately educate, support, and screen this population for comorbidities,” said study author Dr. Laura Lewis, an assistant professor in the College of Nursing and Health Sciences at the University of Vermont.
According to Lewis, five major themes emerged from the study of 37 adults who were self-diagnosing ASD for an average of 3.8 years:
- managing self-doubt;
- a sense of belonging;
- understanding myself;
- questioning the need for formal diagnosis; and
- feeling “othered.”
Many study participants reported always “feeling different” and “isolated” as children, which continued into adulthood, the researcher reports.
“I thought every child spent months alone in their backyard building a radio telescope,” said Kevin Hughes, whose misdiagnosis by a physician increased his level of self-doubt and delayed his formal diagnosis. “I got in trouble in second grade for writing a paper about being from another planet. Even as an adult I’ve never belonged. I’ve lived in three cities for more than a decade each and had no friends in any of them. A lot of things made sense after reading Laura’s paper.”
A majority of participants said they felt an immediate “fit” after finding out they might have ASD. When reading about other adults with ASD, many participants reported feeling like “others were describing my life” and “a sense of belonging.”
One participant wrote, “it was both an incredible relief and very upsetting to hear them more-or-less tell my life story in their own words, from their own experiences.”
“I wanted to serve as a microphone to voices that were not being heard,” Lewis said. “I hope this research helps professionals and the public understand that, first of all, this group of individuals who are self-diagnosed exists; second, that their experiences and self-perceptions should not be dismissed; and finally, that healing is possible through understanding and awareness, whether that is facilitated by a professional diagnosis or not.”
Study participants said the results could help some of the estimated one in 68 Americans with ASD, many of whom don’t receive a formal diagnosis until adulthood, if ever.
“Had I seen Laura’s research earlier I would have said, ‘That’s me, that makes sense,'” said study participant Scott Kramer, who now runs ASD support groups in Chattanooga and north Georgia. “Hearing about her study was like being on an African oasis somewhere and finally seeing water. And trust me, we drink all we can when it comes to research. It’s part of ASD — you read everything when trying to self-diagnose.”
Source: University of Vermont
Photo: Laura Lewis, assistant professor in the College of Nursing and Health Sciences, conducts research designed to improve diagnostic instruments for individuals with ASD and to promote self-advocacy and quality of life for individuals and couples affected by ASD. Credit: Sally McCay.