To improve the diagnosis and care of autistic women and girls, it is important to understand the unique challenges they face. Here are just a few examples.
Misdiagnosis and Underdiagnosis
Autistic women and girls are often misdiagnosed with conditions like borderline personality disorder, depression, anxiety, PTSD, or bipolar disorder. Although these conditions can coexist with autism, it is important to recognize that certain symptoms or characteristics may be better attributed to autism or PTSD resulting from the challenges of being autistic in a neurotypical world.
For example, self-injurious behaviour may be misattributed to BPD without considering its potential link to autism. Similarly, disordered eating, particularly anorexia nervosa, is highly prevalent among autistic females, and evaluating them for autism may be necessary.
Although our survey participants were not only women, over 24% reported being misdiagnosed. Over 90% experienced both depression and anxiety, and 35% have had an eating disorder. OCD, ADHD, PTSD, and BPD were also commonly co-occurring conditions.
Autistic masking is hiding thoughts, feelings, and behaviour to try to fit social expectations. It can involve mimicking the actions of neurotypical people, suppressing stims and leading to cyclical burnout. Girls are often socialized to mask their autistic traits better than boys, making it more difficult to detect autism from the way they act.
Additionally, the media’s portrayal of autism as a male-dominated condition can perpetuate the myth that women and girls cannot be autistic. It is particularly concerning when healthcare professionals are ignorant of how masking influences autism symptoms among diverse groups.
A phenotype is a word scientists use to describe how people look, behave, think, feel, and learn based on their genes. Girls might be quieter and more compassionate-seeming than boys, for instance. They may also appear to be better at socializing, and their special interests may not strike healthcare professionals as “unusual” — for instance, little girls with butterflies as a special interest might be seen as neurotypical or misdiagnosed with another condition.
Oftentimes, these traits are overlooked because assessors are looking for traits characteristic of young boys. They’re likely to be using diagnostic tools and approaches based on research that excluded women and girls, which can make it difficult for them to assess autism accurately in those demographics.
Shortage of Specialists
There is a shortage of specialists who are knowledgeable about diagnosing and treating autistic women and girls. As a result, healthcare professionals may downplay or dismiss their challenges, gaslight them, and question their understanding of autism, which further exacerbates the issue.
An astounding 84% of autistic adults recently surveyed by AutismBC said finding someone to conduct the assessment was a major challenge on their journey to getting diagnosed.
“There are a handful, if that, of people who are actually doing adult assessments in the province. The demand is getting higher, but the expertise is not there. It’s slowly happening,” Dr. Iarocci, a psychologist who specializes in autism told us in a recent interview. “One person like me can only do so many because I have a part-time practice, and they take a lot of time.”
Lack of Research
There is a significant gap in research on autistic women and girls, which leads to diagnostic oversights. This results in insufficient education among doctors, therapists, and other healthcare professionals who may not be aware of the unique ways autism can present in women and girls.
“There’s limited research on how you do autism assessments in adults. All of us who do assessments on children have kind of adapted and made our own set of tools or our own sort of format for how we do an adult assessment because people are kind of scrambling to figure out how we do it properly,” says Dr. Iarocci.
“There are no standards or guidelines. There’s very little in the way of research evidence to suggest this is the tool, this is how we use it, and this is how we do it. And that gets in the way.”
To help more autistic women and girls in BC get diagnosed, we need to train healthcare workers to support people with different types of brains and ask for enhanced government support. Learn more through our blogs on autism assessment in BC.