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Invisible women, lost girls: To be female on the autism spectrum

November 19, 2018


Weird.

Nichole Lowther has heard the word her whole life.

Bright, even charming, she nonetheless never felt comfortable in groups or making small talk. A hard worker, she had a tough time finding or keeping a steady job. Could it have been her unvarying wardrobe, her lack of eye contact, her encyclopedic knowledge of Star Trek? Then there were the times in public when a loved one would pull her aside and plead, “Be normal.”

But a few years ago, when her son Matthew, now 6, wasn’t meeting developmental milestones despite early intervention services, Lowther took him to a specialist. The doctor noted certain telltale behaviors of autism – walking on his tiptoes, rocking, wiggling fingers near his eyes.

“I said those weren’t autistic behaviors, because I do them,” Lowther, of Burlington County, recalled telling the doctor. “She said, ‘Have you ever been tested?’ “

So last year, at age 42, Lowther was tested. Textbook autism, she was told.

“It was such a relief,” Lowther said. “I was like, ‘OK. Now a whole lot of my life makes sense.’ ”

For women and girls living on the autism spectrum, diagnosis too often comes late, if at all. Though boys with Autism Spectrum Disorder (ASD) — the country’s fastest-growing developmental disability — are estimated to outnumber girls by 4-1, experts now say that may be because many females are overlooked, their symptoms dismissed or misread.

“If girls are chronically diagnosed later than boys, they’re missing that most valuable treatment time,” said Diana L. Robins, head of the A.J. Drexel Autism Institute’s Research Program in Early Detection and Intervention. Research has shown that children who get treatment before age 2 or 3 show the most improvement.

But for many females, diagnosis doesn’t come until they are well into adulthood. That can mean decades of social rejection, depression, anxiety, and unrelenting confusion.

“We’re not doing a great job of identifying all the females,” said Thomas Frazier, chief science officer for the advocacy organization Autism Speaks. “We’re going to have to identify females better, particularly females who are more cognitively able, and then do studies on them to see what the differences look like. The fact of the matter is, it’s even hard to study right now” because the subjects are so limited.

Female autism often expresses itself differently. Recent studies suggest there may be genetic differences, even brain differences, between autistic males and females. Some research indicates the physical makeup of the female autistic brain may be more like the brain of neurotypical males than autistic males or neurotypical females.

ASD, though it covers a wide range of traits, is characterized by social and communication challenges, repetitive behaviors, and sometimes sensory hypersensitivity. Many professionals — doctors, teachers, counselors — are used to looking for autism as it appears in boys. But females on the spectrum hide in plain sight. They go undetected because their behavior may conform more to social norms — not enough to be fully accepted, perhaps, but enough to elude detection.

They may be glossed over as merely shy. Or they may be quite verbal, even chatty, but they are confounded by the complexities of the neurotypical social world. Seeming directness may be misread as hostility.

Some have been told they can’t be autistic because they love writing and language, not science or math — a long-standing stereotype that has been debunked. Many autistic females favor functional clothes or limited colors; one of Lowther’s friends jokes about her “prison jumpsuit” wardrobe of solid neutral tones. But some admit to studying fashion so they can fit in, similar to lower-functioning children with autism who echo others’ words they don’t actually understand.

Girls may exhibit autism’s repetitive, narrow interests, but theirs may be less pronounced than boys’ or more like neurotypical girls. Boys with autism may become fixated, even obsessed, with one cartoon character or a bus schedule, but what’s so odd about a little girl who sleeps with a bed full of plush animals? What may go unnoticed is that the little girl never plays with those stuffed animals.

Yet those girls can grow into successful women who view their difference as a gift. Temple Grandin is an internationally known animal-behavior expert and autism advocate. The poet Emily Dickinson also is believed by many people to have been on the autism spectrum.

“They are very often incredibly creative individuals, almost like Renaissance people who are extremely bright,” said Dania Jekel, executive director of the Autism Asperger Network (AANE), a national advocacy group. “On the other hand, the anxiety can be completely crippling for them, especially when they are misunderstood. People see a verbal, bright woman, and the expectations for that person are way, way high.”

Like many bright young people, Nomi Kaim was excited to be venturing forth in life when she enrolled in Bryn Mawr College in 2003. The campus was a long way from her New England childhood, where she was bullied, called a “social retard” and fell into a depression she couldn’t shake.

But Bryn Mawr only lasted a year. The work wasn’t so hard, but there was too much of it for her to process. Her roommate hated her. There was too much noise everywhere. Her depression was crushing. When she went home, she was hospitalized, one of many times in the years to come.

It was around then, just before her 21st birthday, however, that her issues finally got a name. She was diagnosed with Asperger’s syndrome, a high-functioning form of autism.

“I felt this great sadness,” she said. “I felt this sense of dread and humiliation.”

Eventually came acceptance. She hasn’t been able to hold a full-time job, but she volunteers at AANE, counseling other women.

Kaim, 35, thinks that if her autism had been detected when she was a child, if she’d gotten help early enough, her life might be different. She might have finished college and become a writer. But it’s more than that.

“My self-esteem might have been preserved,” Kaim said. “I might have felt less afraid of the world and not so alone. I felt I was defective.”

Depression and anxiety frequently accompany people with ASD but experts find that depression is especially prevalent among females beginning in adolescence. Eating disorders are also common. So is post-traumatic stress disorder, as well as emotional or sexual victimization.

“It’s a major issue because women on the spectrum have a hard time gauging the motives and depth of feeling from other people,” said Anthony Rostain, a professor of psychiatry with Penn Medicine and an expert in adult development disorders. “In the desperation to feel appreciated, they’re often taken advantage of, and sometimes even more seriously mistreated or abused.”

Jessica Brown, 36, of West Philadelphia, was 30 years old before she was diagnosed. Even then, she recalled, one man she dated would try to pressure her to do things sexually she didn’t want to do. He’d say, “Oh, that’s because of your autism.” Looking back, she said, “it felt like a form of gaslighting.”

But she had always felt like an outsider. Growing up in a black, middle-class family in the largely white, suburban town of West Chester, she often felt the odd one out.

As a girl who didn’t understand the neurotypical world’s social cues, Brown was told she was mean, even a bully. A college honors graduate, she nonetheless had trouble keeping jobs because of social missteps, rather than work performance.

Now, she works with special-needs children. She finds joy in reaching those others cannot — like a little boy deemed nonverbal who piped up and said, “Jessica. Hi.”

Brown is learning her own abilities.

“I can read raw emotion really well,” she said. “I’m not great at the social stuff, but I can really motivate kids. It’s easy to let them know I love them.”

Self-knowledge has helped Lowther, too.

Like a lot of autistic people, she finds social media a blessing: “I join groups that are focused on things I like, and I can say things without being labeled a freak.”

After-school programs for nonverbal children like her son have proved scarce, Lowther said, so they find their own adventures. Sometimes, he melts down in public, she said, and people stare. “So I start acting like a dinosaur to take the attention off of him. There’s something to be said for a 40-year-old woman running around the Moorestown Mall acting like a dinosaur.”

At times, she still needs her noise-canceling headphones: “Some sounds I can feel in my bones,” Lowther said. Adults still get annoyed by her behavior, but at least now they know why.

“To be honest, knowing that my son and I are on the same journey is cool,” Lowther said. “He goes to therapy to help with behaviors and speech, and I think that they’re helping me, too, because I sit in on them.

“Maybe I’ll never be ‘normal’ to most people, but they don’t seem to enjoy themselves very much. I have my husband and son, and I find my own joy. I’m never lonely in my imagination. There’s always something to do there.”

 


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