This week, Guardian columnist Nicola Clark started the Twitter hashtag #SheCantBeAutistic to highlight how women with autism are often dismissed, misunderstood and underdiagnosed — if diagnosed at all.
And, not surprisingly, #sheisntalone.
The Centers for Disease Control and Prevention reports an autism spectrum disorder prevalence rate of 1 in 68 American children. But getting that diagnosis, and the life-changing therapies and resources that can come with it, is particularly challenging for adult women like Nicola Clark because the combination of gender and age can make them doubly invisible to the clinical community.
The Mayo Clinic notes how historically, autism has been described as a neurodevelopmental disorder that results in "extreme male brains." In fact, many diagnostic tools have been developed based exclusively on how autism functions and presents in boys.
So what if you're a woman like Clark who long suspected she was autistic? Requesting a diagnostic assessment from your general practitioner is sort of like visiting a proctologist for a pap smear. It's probably not going to happen.
Why not? Consider the disorder's three primary symptoms: social impairments, communication difficulties and repetitive or restrictive behaviors. Based on that rubric, boys are four to five times likelier, on average, to be diagnosed with autism.
At least for now.
More recent studies that are paying closer attention to both how girls' brain structures and socialization patterns are identifying more sex- and gender-specific symptomology, especially among high-functioning kids. For instance, autistic girls tend to be more social and verbally fluent than boys, and any repetitive behaviors are often less outstanding. Whereas autistic boys might exhibit aggression and hyperactivity, autistic girls are also more adept at masking outward manifestations of the disorder.
Fast-forward a few years and even the astute eyes required to spot autism in young girls can easily overlook women who've grown up coping without any medical intervention. Having friends, families and stereotypically feminine interests are all factors that can disqualify women from receiving autism assessments, as The Guardian's Nicola Clark wrote.
Instead, Cynthia Kim at Autism Women's Network says autistic women are likelier to be diagnosed for eating disorders and anxiety, which commonly co-occur with autism in women, as well as obsessive compulsive disorder, bipolar disorder and borderline personality disorder.
Regardless of gender, being an adult with autism can be tremendously challenging since much of the research and resources are concentrated on minors. In June 2015, University of North Carolina psychiatry professor Dr. Joseph Piven told The New York Times, "There is almost no literature on older adults with autism in the field, so we have virtually no knowledge base." Nor is there much subsidized assistance for things like job training, affordable housing and counseling.
From there, the treatment gap only widens with age. When autism consultant Cos Michael attempted to dig up any existing research on older autistic women and menopause, she found nothing. "I can find no project at all that focuses on the health and wellbeing of older women, not in the past, not now, or in development," Michael wrote in a blog post at Network Autism.
Amid the unknowns, a basic fact remains: There's still a ton to be explored and clarified in how autism functions and presents in girls and women, including its effect on relationships and employment as well as optimal treatments and resources for women with autism across their life spans.
In the meantime, another fact that shouldn't be underestimated is how a correct diagnosis can make a world of difference in a woman's life.
As Nicola Clark wrote: "When the diagnosis came I cried with relief. I'd felt it was almost a battle, that I'd had to prove myself, that I wasn't mad."