Girls Autism Diagnosis Frequently Missed

April is Autism Awareness Month so we are writing about Autism.

At the Autism Symposium, there was a session that really helped me understand why girls with autism are diagnosed much less frequently and later than same-aged boys.  The presentation was titled “Hidden in Plain Sight… Women’s Camouflage of Autism” led by Jillian Allen, M.A. and Bayley Mays, J.D..  Brightstone Transitions is a young adult transition program for people on the Autism Spectrum, and their website shares several articles about girls on the spectrum (https://brightstonetransitions.com/womens-program/related-articles/)

What was so interesting for me was that since girls are expected to be more social culturally, girls with autism learn to study neurotypical girls’ nuanced communication and then mimic the other girls.  In this way, they appear as if they are getting social cues when often they are not, like the way we copy phrases and interactions in a foreign language until we become more fluent.

I was able to relate to this “camouflaging” concept personally with one of my female relatives.  Her autism had been missed in the past when she was evaluated primarily by her social cues. For example, a testing psychologist went to observe and evaluate this young woman and ruled out autism because my family member could make eye contact and use her eyes to communicate.  She had picked up on social skills and social cues for simple situations, but longer observation of her one-on-one or in a group with her, I see her start to get sensory overwhelmed. She also has very perseverative, restricted interests. When she was small, I remember that she loved origami.  When she could visit, I would find intricate small origami figures all over our house! It was a way for her to self soothe and use her hands in a socially acceptable way, rather than hand flapping or other self-stimulating behaviors. 

Does she often have difficulty with social communication and social interaction?  Yes.  Does she often miss important nonverbal communication?  Yes.  As a teenager, she learned how to look coy and attract boys, but really had no idea at all what a healthy relationship might look like!  Does she have repetitive movements?  Yes, but she manages with fidget toys or bouncing.  Does she have rigid patterns and fixated interests?  Yes.  Does she have sensory issues and get overwhelmed in some situations?  Yes. 

Let me say that I love this person completely and she is a bright, sweet young woman.  I want her to learn strategies to be able to deal with her emotions and anxiety when she gets flooded with too much input.  I want her to learn to enjoy life and live a productive life.  Whether or not she meets the diagnostic criteria for autism or possibly Social (Pragmatic) Communication Disorder, is not nearly as important or relevant as helping her learn how to navigate and build resilience so she can do well as an adult!

When I read my blog to this young woman’s mom, she wanted me to add that when her daughter finally did get an autism diagnosis from a therapist, it was a great relief and comfort to both the family and to her to know and better understand why she felt so different from others.  Once she understood the diagnosis and accepted/embraced it, she has begun to adapt and build strategies to reduce her anxiety and to advocate for help when she gets overwhelmed.

For all parents and relatives of girls who struggle with social anxiety and may meet some if not all of the criteria for an autism diagnosis, we need to be accepting and affirming of these young women and help them and the world to see not only their challenges, but their strengths and giftedness as well.

Louise R. Slater M.A., CEP, CPC, CAI-1

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