Daryl Hannah has made headlines for opening up publicly about being autistic, a diagnosis she received as a child. Hannah is 52 and a woman, which makes her what some people consider to be a rare entity in the autistic population: female and middle-aged.
Hannah could not, as a child, have received a diagnosis of Asperger Syndrome, as that diagnostic category didn’t exist then–and is about to cease existence again. Her autism, she has said, left her with debilitating shyness and a need to rock for self-soothing and made public events a terror for her. At the time she was diagnosed, Hannah has said in interviews, medical professionals recommended that she be medicated and institutionalized. Instead, she went on to act in some movies you might have heard of before transitioning to a quieter life.
When it comes to autism and being a girl or woman, a unique set of issues emerges. Autism is frequently described as a condition that affects three or four times as many boys as girls. In addition, girls who are diagnosed at a young age tend to exhibit more intense symptoms of autism. What that implies, at least for some experts, is that girls and women often go undetected, not standing out as much from their peers as autistic boys across the spectrum might.
In other words, Hannah’s experience of being an autistic female might be more common than many people think. Writing at SFARI.org, autism researcher Meng-Chuan Lai discusses some reasons that the detection radar tends to miss autistic girls and women. He notes that autism, as defined and diagnosed today, skews to identifying males because they have been the predominate clinical research population for autism since Kanner and Asperger first characterized the condition. Indeed, the absence of girls and women from autism research has led one investigator to call them “research orphans.”
Autistic girls and women, Lai writes, share the “same core cognitive-behavioral characteristics” as autistic boys and men. But because girls and women tend to have a different suite of behaviors from males, autism or not, their version of autism tends to differ from that of boys and men.
An example is the assumption that autistic people lack creative or imaginative thinking. Autistic girls can and do engage in imaginative play. Autistic girls and women also overall tend to lack one of the keystones of an autism diagnosis, repetitive and stereotyped behaviors, illustrating how the criteria skew to identifying boys.
Lai also points out the clinical focus on boys in autism-related studies and the fact that girls are overall diagnosed later in life. In addition, unless a autistic girl has accompanying intellectual disability or other issues, she is less likely than a boy with the same traits to receive an autism diagnosis. And because autism is considered a “male” condition, autistic girls and women can find themselves instead misdiagnosed with a variety of disorders. Obviously, this misdiagnosis carries repercussions that can include misapplied interventions, wrong assumptions, and lack of much-needed understanding and support.
Read the whole story at Forbes.com
