The country and the world are increasingly tackling the difficult issues around bias – racial, gender, religious and otherwise. For the neurodiverse community, gender bias in the medical community has its own ramifications and can specifically lead to a late diagnosis of autism in girls or perhaps no diagnosis at all.
While Autism as a scientific study seems to be evolving by the day, it is still represented as skewed heavily towards males. A surf around the internet and you’ll find statistics supporting this – such as boys boys are four times more likely to be diagnosed than girls. Or, according to the CDC’s 2016 survey, 1 in 34 boys identified with autism while the number is 1 in 144 for girls.
But are the numbers valid? There is increasing attention given to girls who have been diagnosed later than their male counterparts and why this is the case.
Due to gender differences, there is a thought that girls are able to ‘mask’ more effectively than boys. Their ability to copy the world around them effectively hides the lack of ability to read social cues, repetitive behaviors and other elements that would signal a possible autism diagnosis. Time and time again, behaviors that might be noted as flags in boy are dismissed as typical interests for girls. For example, if a girl is hyper-focused on horses and unicorns, this may be seen as typical development but the same focus in boys on airplanes or bicycles might be noted as a sign of autism.
The issues of gender bias in medicine and autism diagnosis specifically underscores what patients and patient advocates of any kind already know – you must be your own defender and insist on further assessment if you are concerned. Parents who have walked this path note that even while they are raising behaviors and concerns that are traditional flags or autism, they have had to fight – even switching Doctors and traveling afar to seek specialists – in order to further testing to pursue a diagnosis.
And what is the result of a lack of diagnosis? Late identification of autism in girls means delayed access to resources that help these girls manage anxiety, teach them how NOT to mask in order to reduce stress. Early therapeutic support while neuroplasticity – the brain’s ability to form new connections – is still active can yield progress in some common areas of challenge for autistic people – like speech, non-verbal communication and social skills. We can only guess at what the impact has had on the study of autism itself – skewing studies and study participants male would certainly serve up results that pertained to males, and further perpetuate the lack of focus and resources for females.
Whether gender bias in diagnosis comes from lack of diligence on the part of medical staff, from indoctrinated beliefs due to Autism studies that traditionally focused on boys based on the belief it skewed towards the male gender, or if in fact girls are able to better mask their autistic traits, the path to resolving these discrepancies lies in awareness and advocacy.
Here at Rootines, we are improving our app based on user feedback. In the coming weeks you WILL see a feature to track menstruation (we didn’t forget about this – our CEO is a woman after all!) If there are other elements that you believe would be helpful for your child –whether related to gender or not – please email us at firstname.lastname@example.org OR you can use the chat function on our website at https://rootines.app. Our team is small but mighty and we read and pursue everything that is submitted.