High Functioning Girls With Autism Often Go Undiagnosed

A topic that is getting a lot of coverage in the news this past year is the discovery that autism research may have gender-skewed results leading to high functioning girls on the spectrum going undiagnosed. The main reason for this discrepancy is that girls and women haven’t been represented sufficiently in scientific study, and so the diagnostic benchmarks have been set by boys, and then assumed to be the same for girls. This assumption has been dramatically questioned in the past year through research that began to look at the brain development of boys and girls on the spectrum separately. Below are the three main ways that girls with autism have slipped through the cracks, and gone undiagnosed.

Girls not showing repetitive behaviours

Spectrum recently featured an article about diagnostic testing for women falling short. Girls who go undiagnosed in childhood may find it difficult to obtain an autism diagnosis later. Girls may be flying under the radar because they don’t show repetitive behaviours and restricted interests — or don’t show them in a way that is obvious to caregivers or clinicians. Girls may not receive an autism diagnosis even when they exhibit communication and social deficits, because of their lack of repetitive behaviours, which is one of the main markers of autism on the ADOS diagnostic test.

Girls not represented in scientific study

An eye-opening program on CBC radio this past week highlighted a little known discrepancy in the scientific world: 80% of the lab rats and mice used in research are male. This means that women are underrepresented as a whole in scientific research, a fact that can have major health repercussions when it comes to the development of treatments and medications. This  gender discrepancy  is mirrored in the field of autism.  The diagnosis ratio to date has been one girl with autism to every ten boys – with the greatest gap in numbers being for those who are high functioning.  Most diagnostic assessments are based on research with boys with autism and seem likely to be biased toward behaviours typically seen in these boys. It is becoming clear that we really don’t know  if autism affects mainly boys (as has been the assumption), or if  aspects of autism in girls are simply distinct and harder to recognize.

Girls can mask behaviours better than boys

In 2014, researchers have discovered that high functioning girls on the spectrum are typically exhibiting social skills at the level of most “neurotypical” boys, but at a lower level than most “neurotypical” girls. Research is now showing that having little desire to socialize, or little ability to socialize may actually be a male trait for those on the spectrum that is not mirrored by girls. Many high functioning girls on the spectrum work hard to learn and maintain a degree of social acceptance, in a way that is specific to the female gender. While autism is often marked by an absence of “pretend play”, this is less true for girls on the spectrum. Girls also seem to have less “unusual”obsessions than boys.  Little girls who are hyper obsessed with Barbies or collectable dolls can seem totally “normal”, as opposed to a boy who is hyper obsessed with the ceiling fan or pattern of the floor tiles. There is even research that suggests that for some people image obsessions that lead to disorders like anorexia can be a symptom of autism .

Going undiagnosed with autism can be very frustrating

Going undiagnosed with autism can be very stressful for someone struggling to find coping methods to fit in while not really understanding why they can’t. Those who go undiagnosed with autism often face intense anxiety, and struggle to get the support they need.  It is often a relief for people to get a late autism diagnosis so they can finally understand their challenges and get help.

What is becoming clear is that we need to put more money and research into gender specific studies of autism and other disabilities. As Jeffrey Mogil, neuroscientist and pain specialist at McGill University has said about the gender discrepancy in health research as a whole:

“If the clinical population is overwhelmingly [female] , it seems to me we have an ethical duty to study female biology.”