Interventions for Girls and Women on the Autism Spectrum
When Dr. Susan Epstein’s daughter was just a toddler, people were surprised to learn that she had been diagnosed with autism spectrum disorder (ASD).
“It was because she was beautiful and she would look at you sometimes,” said Epstein, a clinical neuropsychologist, whose daughter is now 29. “There was a total lack of knowledge that the very classic set of symptoms really only applies to a subset of people.”
In fact, the traits associated with ASD were developed from decades of research that focused heavily on studying boys. Girls experiencing ASD are likely to be diagnosed later or less frequently than boys, and studies show gender disparities persist throughout the care continuum.
Trained experts can use applied behavior analysis (ABA) to help address the unique needs of girls and women with ASD and tailor intervention and treatment to nurture them.
How Does Autism Present in Girls and Women?
In a 2009 study presented at the International Meeting for Autism Research, researchers explored gender differences in twins with ASD and found that many girls with highly autistic traits also had high IQs and social skills similar to boys without ASD.
Despite their presentations of autism, these particular girls were not diagnosed as often as girls with lower IQ scores.
“A girl may be able to imitate what she sees in other people more, but it tends to be on the surface,” Epstein said.
Common presentations of autistic traits are seen with both boys and girls, including repetitive behaviors and difficulties with socializing. However, social and cultural constructs related to gender and behavior can make it difficult to recognize signs of autism in girls. Unfortunately, when girls with ASD are diagnosed less frequently or later in life, they may spend much of their developmental years without the intervention or treatment they need.
Behavioral Traits of Girls with Autism
According to the Simons Foundation Powering Autism Research for Knowledge (SPARK), girls may present similar ASD-related traits as their male counterparts, but because of societal and gender norms, people may overlook these characteristics in girls or feel less of a need to begin a behavioral intervention.
Some of those traits include the following:
- Minimal eye-contact
- Likely to mimic others in social situations
- Appearing calmer in school or social situations than at home
“It’s important to look at the whole person and make sure that you’re going back to a qualified professional who is able to diagnose that for you,”said Kristy Johnson, an adjunct faculty member at Simmons University who works in a public school district as a behavior analyst for students.
Communication and Independence
In a 2017 study regarding sex differences in parent-reported behavior in children with ASD,researchers found that girls with ASD had similar scores to boys with ASD regarding communication skills; however, girls struggled more with executive functions, which are self-management skills for completing tasks that can be addressed and treated by a behavior analyst.
Girls in the study demonstrated difficulty with the following:
- Organizing information
- Completing daily activities
- Working short-term memory
- Impulse control
- Cognitive flexibility
Personal interests and hobbies are common for many children, including those who are considered neurotypical (or neurologically typical) and not on the autism spectrum or diagnosed with a developmental disorder.
However, a fixated fascination in a niche topic is a more commonly observed behavior in people with ASD. These special interests are highly meaningful subjects that take the form of an object, place, activity or character. Topics vary widely at the individual level, but for girls experiencing ASD, these special interests are likely to present similarly to neurotypical girls’ interests.
“The classic ones you see with boys are often trains or cars or things of that nature,” Johnson said. “When I have worked with girls, their special interests oftentimes are associated more so with what society would deem more girl-appropriate,” such as storybooks, unicorns and horses, fantasy novels, jewelry — topics that aren’t out of the ordinary for their age group.
While the similarities to neurotypical girls’ interests may be affirming and likely to build social inclusion with their neurotypical peers, the difference is that special interests are more pronounced and fixated for girls with ASD and unlikely to fade as they move through adolescence toward young adulthood.
How Can Interventions Be Tailored to Girls?
Behavior analysis interventions are often tailored to the individual, but acknowledging the way society and social groups treat girls and women can help behavior analysts customize interventions to address girls’ needs and promote safety and independence.
“Society says that girls typically more often play this sport or that sport,” Johnson said, “but what comes first is the client’s interests and making sure that your interventions are surrounding their interests.”
Acknowledging the client’s individuality is part of ensuring she has agency over her care. The ethical code within the Behavior Analyst Certification Board serves to confirm the client is a willing participant in her therapy.
That means “bringing the client to the forefront of any potential intervention and making sure she understands why you’re recommending this and making sure that she agrees that that is, in fact, where she wants to proceed,” Johnson said.
Interventions That Nurture Girls’ Needs
One format for interventions is known as an A-B-C (antecedent, behavior and consequence) analysis:
- Antecedent: A thought, feeling or desire that precedes an action.
- Behavior: An action or expression that may be socially inappropriate or obstructive to completing a task.
- Consequence: The result that immediately follows a behavior, usually an outcome that fulfills the original desire or need.
Johnson said these interventions allow the clinician and client to address repetitive behaviors in a way that still meets the client’s personal needs and desires.
In order to address the need, a behavior analyst must help a client identify a replacement behavior, which is a substitute for the action that still fulfills her needs but also allows her to communicate and perform tasks.
For example, Johnson described a girl with limited verbal skills whose niche interest — the antecedent — centered on objects with long, slender or skinny shapes. The behavior that followed was collecting those objects and holding them in her hands at all times. Yet holding the objects kept her from engaging in sign language, which she relied on for communication.
“As soon as you’ve identified the function, you’re able to say, ‘How can I nurture this?’” Johnson said. “We most certainly had to find a more socially appropriate way to have her be able to gather her items, which she so dearly loves.”
The solution was utilizing a bag to keep the items with her, a meaningful replacement behavior that allowed her to maintain her interest but still communicate with others.
Empowering Girls, One Step at a Time
In addition to communication skills, girls and women on the spectrum may need support from parents, therapists and caretakers to complete daily activities.
Activities of daily living are tasks or functions that most people perform on a regular basis and can be addressed by a behavior analyst to help clients gain independence.
“Sometimes it’s just identifying a couple tasks at a time,” Johnson said. “We’re going to learn this task to mastery before we move onto the other.”
For adults, these tasks might include getting dressed or folding laundry — the types of activities people perform without much thought. For children, such tasks can include standing in an orderly line or staying seated at a desk.
One study shows girls have a harder time independently completing activities of daily living, so when the activity occurs at school or the office, it’s helpful to identify someone in the environment who can be of support. (That same study also highlights long-standing issues with representation of girls with ASD in scientific research.)
Not all girls and women have the same lifestyles, but girls may be more likely to complete certain tasks:
- Using feminine hygiene products
- Applying makeup
- Wearing clothes with embellishments or accessories
- Putting on jewelry
- Shaving body hair
- Combing or styling hair
Epstein said girls with ASD specifically need support learning about puberty and menstruation. Girls also may experience social pressures that affect how they respond to and internalize changes related to physical maturity.
“This is true of boys, too, but girls are going to need sex education because they’re really at risk for being potentially victimized,” Epstein said.
In fact, girls with ASD have almost three times the risk of coercive sexual victimization than the average person, according to a 2018 study that explored the link between neurodiversity and coercion.
What Does the Care Continuum Look Like for Girls?
The care continuum is a concept that illustrates how treatment, intervention and other types of care don’t end when a person leaves a clinical space. Care for an individual must persist beyond the therapist’s walls and work effectively to turn all spaces into safe spaces.
“The continuity of care is necessary across all environments to make sure that you’re able to support the individual in all settings that they’re participating,” Johnson said.
Everyone benefits when more people are informed about the autism community— that means including and understanding the needs of women and girls on the spectrum. It starts with educating a community, which includes the following:
- Immediate and extended family
- Peers and social groups
- Parents of friends and neighbors
- Teachers and advocates at school
- Colleagues and employers
- Law enforcement and social authorities
For example, Johnson described a high school student with ASD who was keenly interested in romantic comedies and would perform the same behaviors she saw in those movies, namely writing love letters to boys at school. The crucial component to this intervention was educating classmates about how to respond in a nurturing way. “Some students did not want to hurt her feelings, so I think they inadvertently kind of reinforced some of it,” Johnson said.
Johnson used the A-B-C intervention method to extend the care continuum to others in the community, such as a school setting:
- Antecedent: A desire for a romantic connection.
- Behavior: Writing a love letter to a classmate.
- Consequence: Receiving a reaction from the classmate that may or may not be positive.
For the replacement behavior, Johnson helped the student to create a decision chart to identify whether to deliver the letter to its intended recipient. The chart included questions to guide behavior: “Does the person already have a girlfriend? If so,” the chart read, “then you need to move on from that person,” and so forth. Creating and respecting others’ boundaries helped the student avoid negative or uncomfortable social interactions.
“We had to go to the other students and say, ‘If you’re not interested, it’s okay. Here’s what you just need to say,’ and giving them the tools also,” Johnson said.
But school isn’t the only environment where girls diagnosed with ASD encounter their peers. Teenagers and younger adults who are employed also need a care continuum at work.
“A lot of times, it takes sitting back and truly just observing the environment in itself,” Johnson said. “What are the demands that are going to be placed on her?”
From there, clinicians can begin to pinpoint needs for meaningful interventions and identify community members and peers who can provide support.
Organizations for Further Reading
- Aspire: The Female Autism Network
- Autistic Women and Nonbinary Network
- Autistic Women’s Association
- International Aspergirl Society
Citation for this content: Simmons University's online master's in behavior analysis program.