About 1.5 percent of adults in the United States identify as having self-diagnosed autism. As a result, this population can face unique challenges in accessing appropriate care and support, including acquiring a formal diagnosis and engaging with professionals who understand their experiences.
Moving forward, A new study in the journal Archives of Psychiatric Nursing, conducted by researchers at the University of Vermont, San Diego, has taken an in-depth look into the experiences of self-diagnosed adults with autism.
The study surveyed participants recruited via various online platforms and self-identified as being on the autism spectrum without a formal diagnosis.
The survey asked questions related to general demographic information, symptoms, co-occurring conditions, the family of origin characteristics, online resources and support used to cope with autism, knowledge and awareness about autism spectrum disorder (ASD), and perceived strengths and weaknesses.
The results showed that a few issues were particularly salient among the participants. These issues were managing self-doubt; a sense of belonging; understanding myself; questioning the need for formal diagnosis; and feeling “othered.” In other words, self-diagnosed people often feel isolated and disconnected from the rest of society due to their differences. However, they also felt the urge to find a way to be accepted and understood despite the lack of a formal diagnosis.
In an interview with one of the participants, they stated: “I thought every child spent months alone in their backyard building a radio telescope.” He was misdiagnosed by his physician, thus leading him to have self-doubts & even delaying his formal diagnosis. He adds, “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.”
Another participant wrote, “it was both an incredible relief and very upsetting to hear people more-or-less tell my life story in their own words, from their own experiences.”
The need to assist self-diagnosed individuals
According to Laura Lewis, the lead author of this study, “Health professionals must understand self-diagnosis to help individuals move to formal diagnosis and to adequately educate, support, & screen this population for comorbidities.”
She adds that without proper diagnosis, this undiagnosed population is likely at a higher risk of depression, anxiety, and suicide. Many participants felt relief when they found support groups and communities with similar experiences.
“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 a professional diagnosis facilitates that or not,” says Laura Lewis.
The research team concluded that self-diagnosed adults with autism need more education, support, and advocacy to ensure their well-being and successful transition to formal diagnosis. This can be achieved through public health initiatives, better access to mental health resources, and greater acceptance of the unique experiences of these individuals within a society.
With the proper support and understanding, self-diagnosed adults with autism can lead a fulfilling life on their terms.