has heard the word her whole life.
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.
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
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
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
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.
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
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.”
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
acceptance. She hasn’t been able to hold a full-time job,
but she volunteers at AANE, counseling other women.
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.
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.”
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
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
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.”
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.”
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.”
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.
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.
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.”