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Girls and women who are on the spectrum - why they are rarely understood and often misdiagnosed.


After my diagnosis of Autism Spectrum Disorder (ASD) and Twice Exceptional at the age of 45 I almost immediately felt the need to help our community by providing information and awareness to the broader neurotypical society.

I was a “late diagnosis” patient for a number of reasons. Growing up in the late 70’s and early 80’s ASD was little known, and what was understood was either in it’s nascent stage or non-existent. It was exclusively considered a male diagnosis of boys with delayed speech, no desire for social interaction, the inability to make eye contact and “masking” (a very common trait among females) which includes issues and difficulties to try to fit in during social and public settings, was unheard of or not understood by the medical community. This includes inappropriate or no facial gestures – simply put they cannot communicate what they are feeling and in some cases they will not display any gesture at all.

In my case, none of these criteria applied to me. I had no issues accepting my diagnosis, but initially it was very difficult for me to understand how any of these differences applied to me. However, I quickly learned that many of us on the spectrum present in differing ways, and my masking and self-accommodations were similar to what is now known about girls and women (as well as why some men like me fly under the medical radar).

I subsequently learned that Bi-polar disorder often becomes the “trash can” diagnosis for many females and men like me who have organically learned to mask or camouflage our differences. This instilled a desire for me to “level the playing field” between males and females who are on the spectrum, and to help correct what I believe to be a medical injustice.

Currently ASD is three times more likely to be diagnosed in males than females. I do not accept this view and I believe that our neurological differences present equally in both sexes.

There are a number of reasons for this fallacy, and I contend that medical misogyny is the primary driver. All one needs to do is look at some of the history of general medicine and Autism specifically including the “refrigerator mother” theory promoted by Kanner for decades. When in doubt, just blame the mother.

In fact, this discrimination runs deep throughout the history of mental health and even includes the term hysteria – by definition an exaggerated or uncontrollable emotion or excitement. The very word hysteria is Greek for uterus, so therefor in the eyes of medicine if one exhibits these traits, then they are acting like a girl or woman.

This is a primary reason autism diagnosis in females may be the last thing that a doctor will actually pursue when investigating behavioral traits in girls and women. They usually end up with a diagnosis of personality disorder, generalized anxiety, bipolar disorder or a combination of all three.

The issue is additionally compounded by archaic data and the fact that most if not all diagnostic criteria was based on boys with Autism. Therefore females were left out altogether and unfortunately not understood.

Most if not all of the data that was created on the research of autism to create the diagnostic criteria was based upon research of meals with autism spectrum conditions, this does not translate females.

For additional information please go to www.onthespectrumfoundation.org

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