- There is a cycle of underrepresentation in research on the intersection of autism and gender.
- Underrepresentation can lead to identity fragmentation, stress, anxiety and depression for those who don't receive proper diagnoses.
- Schools struggle to meet the individualized support needs of students with autism, a problem that may be more acute with females, transgender, and gender nonconforming students.
With a widespread lack of understanding about autism – particularly its intersection with gender –advocates are calling for more research on the specific characteristics and support needs of autistic females and marginalized students.
“People in the autistic community generally are tired of being referred to inaccurately or having assumptions made about them,” says Katie Punsly, the Verizon Innovative Learning Schools Coach at W.E.B. DuBois Academy in Louisville, KY, who serves on the National Education Association (NEA) Individuals with Disabilities Education Act (IDEA) Resource Cadre. “But this issue is compounded when it comes to the intersection of autism and gender identity.”
Punsly notes that while autistic self-advocates take pride in their autistic identity and have created communities where autism is fully accepted and accommodated, portrayals in media and society create “a number of misconceptions that need to be addressed, especially ones based on historical white male stereotypes about autism.”
Rebecca Schultz, a longtime special educator and another member of the NEA IDEA Resource Cadre, notes that it would be helpful for educators to be better informed about the potentially different characteristics of behavior in autistic females and transgender and gender nonconforming students.
“It is much more likely that these students will mask or suppress parts of their personality for a variety of reasons, which leads to autism being under-diagnosed among these students,” she says.
A cycle of underrepresentation of these groups in research and the failure to recognize their sometimes distinct characteristics can diminish their chances of diagnosis and creates the assumption it is an issue for males primarily. Experts warn this can lead to identity fragmentation, stress, anxiety and depression.
The cadre has consulted with Jessie Kiblen, a doctoral research fellow at the University of Kansas specializing in inclusive approaches to education, primarily with autism, who points out that the historical lack of inclusive research and a clear understanding about autism creates inaccurate assumptions.
“Autistic behavior differs across every person. If you have met one autistic person, you’ve just met one autistic person – just as every other human has varied behavior,” says Kiblen, who also has 15 years of experience working with persons with disabilities. “Too often, however, schools want to fit students into one particular box or another.”
Rigorous research has established that schools struggle to meet the individualized support needs of autistic students, she says, and the problem may be more acute with females, transgender, and gender nonconforming students.
Research has not always focused on specific characteristics such as gender self-identification.
“It is not because there aren't enough female subjects, because one in about every 190 females in America is diagnosed with autism,” says Punsly. “But the exclusionary diagnostic criteria keeps them from being included in studies. Until a few years ago, all the crash test dummies were designed based on the average male build. .We need to pivot away from having men as the default in our scientific research.”
Kiblen adds that research centers are working to make changes, but the roots lie in how disabled people are segregated in schools.
“They are often not provided the same opportunities as others due to being removed from the general education classroom.”
Kiblen also notes that in schools, boys are diagnosed with autism at three-to-four times the rate of females making “girls more prone to be misdiagnosed, diagnosed at later ages, or even missing out on a clinical autism diagnosis.
She points out that research varies on whether gender affects how the characteristics of an autistic person are presented. Still, those unique, less studied behaviors may be part of the reason it isn’t diagnosed among some groups.
Researchers also suggest these and other autistic students too often have been misdiagnosed in the past with issues such as bipolar disorder – or the have another diagnosis such as ADHD or anxiety that overlaps with autism, so that the autistic identity has been overlooked.
Girls with autism are diagnosed two years later than boys, if at all, for a variety of reasons, Kiblen says, including the way that girls socialize and play and contextual factors like gender role expectations. There is some evidence that there is more activity in their prefrontal lobe, suggesting the female brain may operate differently.
“They perhaps are taught to be passive or mimic social behaviors of others more effectively,” Kiblen says. “They learn to blend in and use different strategies to practice social conformity. But they also may be better about faking it. Young girls can be incredibly good at masking.”
Research shows such masking and a failure to diagnose autism among girls may lead to depression, anxiety, eating disorders and even suicidal ideation, she says.
Punsly says while there is a prevalence of autism among transgender people, including those who are nonbinary and genderfluid, “studies mostly speak to a correlation rather than a causation.”
“There is a need to improve access to care, inclusive educational practices, tailored support for this underserved community, and more research,” she says.
Schultz notes that using proper terminology is important to the autism community – for instance calling one an “autistic person” rather than a “person with autism.”
Although person-first should be the default, it is not the rule for everyone and we should verify by inquiring, much like gender pronouns, by asking "how do you prefer to identify?" Many persons in the autistic community prefer to be identified as autistic, because it is also an inherent part of their identity.
“Educators also need to create environments that are truly inclusive and leverage the strengths of every student so these students don’t need to hide who they are,” Kiblen says. “Feeling comfortable to be yourself creates authentic relationships with teachers where students can express what they need. One of the primary predictors of academic and personal success is early disability disclosure.”
Schools should be sure educators have relevant education about teaching diverse learners and how to provide effective supports, offered through professional development and perhaps an online learning module.
“Most importantly, schools should keep students in the general education classroom and help close the academic achievement gap that exists,” Kiblen says, “not because autistic people don’t have the capacity, but because they are often segregated and not provided access to the general education curriculum.”