Autism and Adult Diagnosis
From the 1990’s onward, the diagnostic criteria for autism broadened to include milder forms of autism. Labels such as “high-functioning autism” (HFA), “Asperger’s syndrome” (AS), and “pervasive developmental disorder-not otherwise specified” (PDD-NOS) were recognized. Asperger’s syndrome was only added to the DSM-IV, the handbook for diagnosing psychiatric disorders, in 1994.
Autistic children are now being diagnosed in higher numbers than ever before, but another diagnosis is becoming increasingly common: that of adults who were previously undiagnosed, finally learning that they were Autistic. Some are diagnosed in early adulthood; others as late as 60. Often these adults are mildly Autistic, and in years before diagnoses of mild autism were common, they were assumed to be eccentric or quirky. In cases where their disability was more obvious, many were misdiagnosed with other conditions, most commonly with attention deficit, intellectual disabilities, or mental illnesses as diverse as obsessive-compulsive disorder to schizophrenia.
There are several ways an Autistic adult can be diagnosed. Some adults receive their diagnosis from seeing mental health professionals for other problems, or go to obtain a diagnosis for their mysterious condition. Some read about autism on the Internet and go for a second opinion. It’s not uncommon for adults to be diagnosed with autism after the diagnosis of their children or other family members.
Many autistic people opt not to go to a mental health specialist for official diagnosis. Although some are dubious of people who are “self-diagnosed,” there are several reasons a person may avoid diagnosis, particularly when the diagnosis would cause more harm than good or there is no benefit to be had from a diagnosis.
Adult diagnosis comes with its own set of problems. Many Autistic adults encounter problems when they try to obtain the diagnosis, as autism diagnoses are more easily obtained for children. Some areas lack a person qualified to make a diagnosis, and in some counties a diagnosis must be made before a certain age in order for the Autistic person to qualify for services or benefits. An autism diagnosis can be costly and time-consuming, and can leave adults seeking diagnosis broke and exhausted. An autism diagnosis may also make an Autistic person uninsurable or lead to issues with child custody arrangements, or have other unwanted legal effects. There are several well-documented cases of Autistic adults being arrested or injured when the police mistook their disorder for criminal activity.
Due to misconceptions newly-diagnosed adults might hold about autism, they may experience negative emotions such as grief, anger, or denial when they are diagnosed. To complicate matters, friends and family may be unsupportive or openly doubtful of the diagnosis, which can leave the autistic person isolated or cause self-doubt and shame.
After the diagnosis becomes clear, Autistic adults may deal with their disability in different ways. For example, Rachel Cohen-Rottenberg, who blogs at Journeys with Autism, was diagnosed in her 50’s. She became a self-advocate and is involved in the neurodiversity movement. People in the neurodiversity movement may reject the medical model of autism and see autism as a valid neurological style that does not need to be cured. Neurodiversity advocates have formed groups and advocated for better disability legislation both nationally and locally. Widespread Internet access has led to a large and strong Autistic community online, where communication barriers are more easily overcome and other Autistic people are more easily found. This online community, from personal blogs to social networking sites and autism forums, has given a sense of belonging to many Autistic adults.