The big news—that there are MANY more girls on the autistic spectrum than previously realized—isn’t surprising to me. “The Invisible Girls” by Maria Szalavitz in the March/April Scientific American Mind simply confirms what every autism mom of a daughter has always known. Gender bias exists in other areas of medicine, so why should autism be any different? Heart attacks in women often go unrecognized and untreated for longer because doctors have only recently realized that women’s  symptoms are different than those found in men. Delayed treatment for female heart attack victims leads to greater damage and a worse outcome (duh!). The same holds true for autism diagnosis and treatment. The earlier ALL children start therapy, the better their chances for progress.

Why are fewer girls diagnosed with autism?  According to Szalavitz, current diagnostic methods overlook girls for several reasons. For many years, “experts” thought girls with autism were more impaired and lower functioning, whereas new research suggests both of these theories may be wrong. Girls with milder disabilities or Asperger’s Syndrome are often missed. ASD girls frequently remain invisible to educators and experts because the diagnostic criteria for autism were formulated specifically for males. Further complicating the issue, overlapping diagnoses, such as OCD and anorexia, may also mask autism in girls. Preliminary neuroimaging suggests autism presents differently in the brains of girls, which may be more comparable to brains of neurotypical boys in terms of social abilities than either typical girls or boys with autism. Researchers are also finding that girls on the spectrum show fewer signs of restricted interests—like the pre-occupation with numbers or trains— found in boys. Lastly, girls with autism tend to care more about connecting socially than boys on the spectrum.

“Everything we thought was true of autism seems only to be true for boys,” says Kevin Pelphrey, a researcher at Yale and father of both a boy and girl with autism. He adds: “Sex hormones affect just about every structure and process you might be interested in…”  I’m not a Yale researcher, but as the mother of a daughter on the spectrum, I could have told you about the powerful effect of female hormones. As soon as Sarah approached puberty, her behavior in all areas improved dramatically.  She became calmer, less volatile, and more socially appropriate—the opposite of what you might see in a neurotypical 13 year old. However, I’m not saying all girls on the spectrum are like Sarah.

In fact, Sarah is quite different from the new diagnostic criteria mentioned in “The Invisible Girls.” She isn’t at the very top or bottom of the autistic spectrum, and she was lucky enough to be diagnosed extremely young because of the early developmental differences between Sarah and her neurotypical twin brother.  As a toddler, Sarah fit the old autism criteria for boys: limited interests, absence of pretend play and language delays. Although my daughter received many labels throughout her childhood (PDD, PDD-NOS and atypical autism (?!), she wasn’t misdiagnosed with OCD or anorexia. Unlike many young men and women on the autistic spectrum, Sarah doesn’t mind crowds or bright lights and actually LIKES noisy, crowded restaurants. She also thrives on stage while performing and sings with perfect pitch.

Unlike Samantha, the Yale researcher’s daughter wasn’t diagnosed until age 12.  Apparently, lack of eye contact had been recognized, but misunderstood as a separate symptom: strabismus (eye drifting in). Ironically, early treatment strabismus helped delay her autism diagnosis. By contrast, my daughter’s lack of eye contact contributed to her early autism diagnosis. At age 10, we discovered Sarah had extreme exotropia (eye drifting out) which made it difficult for her to focus clearly on three dimensional objects—including faces! (How can anyone interpret facial expressions they can’t see?)

Reading “The Invisible Girls,” I kept hoping the new research results would help me understand my daughter better and assist her more. But none of the three female examples cited in the article were much like Sarah. Alas, there was no “Aha” moment for me this time. But I’ll never stop trying to understand my daughter better, and I’m glad girls with autism are finally starting to receive the attention they deserve.

Comparing the symptoms of autism found in boys and girls must be used to diagnose and treat both sexes early. I hope researchers will be careful not to over-generalize male and female autism symptoms, especially when looking at cases like my daughter. For now, my Sarah continues to be the square peg, not fitting neatly into any of the gender categories of autism. I suspect this observation will turn out to be true of many young women. Clearly, scientific research involving girls (and women) on the spectrum has a long way to go.