Underdiagnosed, Misdiagnosed, and Masking: Women on the Spectrum

I am the mother of a 16 year old boy who is on the autistic spectrum.  He was diagnosed at age 2 and began receiving services immediately.  I am a 48 year old educator and autism advocate who was diagnosed at age 46.  We are both on the spectrum but came to our diagnoses by very different routes.

Boo Bear was a pretty standard textbook ASD case.  At age 2 he did not talk, engage in reciprocal play, have joint attention, make eye contact, or really seem to bond with anyone besides his father and myself.  I was a middle age special educator and autism advocate who always felt that I had been missing the day that everyone attended a class on being tactful, understanding office politics and executive functioning.  I struggled through elementary school and middle school, began to find traction in college and soared through graduate school.  Yet, I always felt that something was missing.  Along the way I picked up the diagnoses of Anorexia Nervosa, restricting type, Bipolar II, and Generalized Anxiety Disorder.  The anorexia part definitely fit, but I had doubts about the other two.  When Boo Bear was diagnosed his father and I were told that ASD was much more common in males and only rarely seen in females.  We took these words as gospel.  Only later would we realize how wrong we were.

So, why do females on the spectrum fall through the cracks?  Good question.  For one thing, females on the spectrum present completely differently than males.  They may have “stims”, but they are less obvious.  For example, Boo flaps and spins when he gets excited.  I may fiddle with my jewelry or play with my hair. For both of us they fulfill a sensory need.  Boo Bear is nonverbal.  As a child, I was verbally precocious.  However, when I am very upset my verbal skills seem to be leave me altogether.  I call this “going beyond verbal”.  Basically, I shut down.  Females are generally astute observers.  From a young age we learn to watch other females and mimic their behavior.  This is called masking.  Whiles males may be fascinated with dinosaurs or the schedules of trains, females focus their interests on more socially acceptable interests like animals and books.  My pet interests as a kid involved the six wives of Henry the Eighth, the last  czar of Russia and dog breeding.  Okay, I was a strange kid, but I knew not to talk to the other girls in my class about the beheading of Ann Boleyn.  I pretended to be interested in the things my friends were interested in , but it was an effort.  I lived in rural Virginia in the late 1970s.  While it was clear I was highly verbal, terrible at math, could get lost in a wet paper sack, and had a multitude of sensory issues, no one ever thought that I was on the spectrum.  As I mentioned earlier, I picked up some other diagnoses and mood disorders along the way, but none of my doctors or therapists seemed to see the bigger picture.  The more I talk to women who were diagnosed in adulthood, the more common I realize this is.

Fast forward to 2017.  A dear friend of mine, who is on the spectrum, suggested that I might be, too.   I laughed off the idea.  Then, I got curious and started doing research.  Turns out there are a lot of self tests on line for women who think they might  be on the spectrum.  I took a multitude of these tests.  Every single one said I was clearly on the spectrum.  Surprise! Curiosity took me a step further and I went through a two hour interview and a battery of tests given by a knowledgeable psychologist and she concurred with what I was beginning to think; I was indeed on the spectrum.

So, now what?  The diagnosis answered a lot of questions for me.  I now understand why I can easily teach small groups of students but struggle to manage a classroom of 30 unruly 8th graders.  I understand why I can read  voraciously and absorb all sorts of information, but cannot do math higher than a 6th grade level.  My laser sharp focus for detail propelled my through graduate school with ease, but I can get lost 2 blocks from my own house.  I hate wearing makeup and am horrible at small talk.  On the other hand, I can focus on the intricacies of a Mozart piano sonata for hours.  Like my son, I have my strengths and weaknesses.

What do I wish for other women who suspect that they might be on the spectrum?  For the women who feel that they never quite fit in?  I wish for them peace and acceptance.  If anything in my story strikes you, I highly recommend that you do some online research, find a competent psychologist and get yourself tested.  The effort you put forth in doing this may reap some pretty hefty rewards.  Because of my diagnosis I switched careers, and am happier than I have been in years.  I still work very closely with children, but do not have to deal with office politics.  I don’t have to wear makeup or formal clothes to work.  I know that some days I will have boundless energy and other days the world is a very scary place and it is hard to leave my bedroom because of the gut wrenching anxiety.  The idea that autism is a male disorder is a myth.  Autism affects both males and females.  Females may be affected in different ways than males, but our struggles and our triumphs are none the less valid.