Are Girls on the Spectrum Not Being Diagnosed?
The Centers for Disease Control (CDC) reports as of 2015 that autism spectrum disorder (ASD)/Asperger’s syndrome (AS) affects 1 out of 68 children in our country. Previously, it was thought that ASD was diagnosed in boys to girls 10:1. Statistics report a slight shift in diagnosis that results in 1 out of 42 boys and 1 out of 189 girls which is a 5:1 ratio. However, it is believed by many experts that girls are being missed, that there is more “pink” on the spectrum than first realized.
Why is it important to realize the subtleties and find more “pink” on the spectrum? Various studies show that females are either being missed completely, misdiagnosed or diagnosed much later in life. As a clinician and mother of a female on the spectrum, I am concerned about the bullying, dating violence, anorexia, anxiety, or depression that may be masking the ASD/AS on the spectrum female. I want to help educators, parents, and clinicians take a second glance at the spectrum. There are far more females on the spectrum than once realized, and I am grateful that research and studies are increasing about the subtleties found in males and females on the spectrum.
Last year while presenting a seminar, I showed a video interview with my daughter who is on the spectrum, without identifying she was my daughter. At the end of the presentation, a clinical psychologist inquired if the diagnosis for the young lady in the video was accurately diagnosed and said, “If that girl is on the spectrum we are missing them because she did not present like someone on the spectrum.” As a mother of a female on the spectrum, I can attest few clinicians understood differences in male and female presentation of the spectrum.
The author of Six-Word Lessons on Female Asperger Syndrome, Tracey Cohen was diagnosed with AS at the age of 39 and wrote her book about her experience in her words “to help prevent others from much of the hardships and pitfalls” she experienced living life undiagnosed. Tracey further explained that she always knew she was different from the other girls, but she did not know why. She began a new teaching job with a family who had a child on the spectrum, and while attending a conference to better understand ASD/AS she sat in disbelief as she heard the speaker describe ASD/AS. She realized what was being presented was describing her and her experiences.
After speaking to the presenter after the presentation, he encouraged her to speak with a professional, and this led to her diagnosis journey at age 30. Along this journey, she found clinicians were not always aware of nuances of symptoms and presentation of autism by gender, and she was 39 when she and her mother flew to Oregon to seek a professional who specialized in diagnosis women on the spectrum. I asked Tracey according to her research and personal journey, why did she think females were being missed?
Tracey reflected back on her life in our interview and said that she had many struggles and was often treated differently by others or referred to as being incompetent. She said, “Females on the spectrum tend to internalize a great deal, so any ‘symptom’ or off-putting behaviors are less obtrusive than their male counterparts on the spectrum. They tend to have fewer behaviors seen as ‘red flags’ or behaviors are dismissed by professionals or parents as immaturity, shyness, or being naïve. Females on the spectrum may appear to be more competent socially, but they are really hiding the great effort and difficulty for them about being social. Females are also more likely to break down or meltdown later in private.”
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As our discussion continued, Tracey and I discussed how diagnostic descriptions of symptom manifestation measure and assessment were normed on males, but Tracey emphasized, “When it comes to females, it is all about the nuances and subtleties.” For example, the symptom of ‘special or restrictive interests’ is not about how ‘normal’ the interest is, but how the child interacts/plays with toys, etc. Tracey explained that she had dolls like other girls her age, but she did not play with them or dialogue with them in what clinicians refer to as “social play.” Tracey said she preferred to line them up and how she played with her dolls was different than how peers might have interacted with their dolls. When it comes to special interests, professionals may not be asking the right questions as to what the special or restrictive interest may be if they are relying on stereotypical interests such as ceiling fans, collections, or modes of transportation as categories of interests.
But why is it essential for someone to know if they are on the spectrum if they appear to be functioning “normally” or did not require a 504 or Individualized Education Program (IEP) in school? I have heard people suggest that a diagnosis is a disservice to older teens or adults. I have had parents tell me that their child was diagnosed, but they chose not to tell their child for fear of them “not living up to their true potential” if they knew about their diagnosis. I am very passionate about anyone who has a learning difference or social interaction difference to know what the proper diagnosis is to help them achieve their full potential and not to be mislabeled.
I asked Tracey her thoughts on diagnosis, and if parents should tell their child he/she is on the spectrum. Tracey responded, “Knowing your child has the diagnosis and not sharing, in my opinion, is very harmful to them and not only harmful it is indirectly communicating shame as if having autism is something to be ashamed about.” She also shared that telling the child the earlier the better in age-appropriate communication will give them knowledge and knowledge is power. Tracey and I both understand and share that the autism spectrum is not a mental illness, it is about neurodiversity, and it is part of the identity of who that person is. Keeping this diagnosis from someone is a disservice to helping them learn about self.
Females on the spectrum in their teens or young adult life may be misdiagnosed with bipolar, generalized anxiety disorder, or untreated eating disorders. Tracey discusses so much more in her book which is very informative about the differences in males and females and shares much more of her journey. Tracey encourages adults who may think they could be on the spectrum to seek a professional diagnosis because in her words this would be “validation, knowledge, and understanding for themselves as well as to those they may be in a relationship with.”
Tracey Cohen, a lifelong competitive runner, freelance writer, returned Peace Corps Volunteer, was diagnosed with Asperger’s syndrome as an adult. Sharing her struggles and discoveries, her book, Six-Word Lessons on Female Asperger Syndrome, she aims to empower others to learn, accept, and find peace in our complex, neurotypical dominated world.
This is article was featured in Issue 73 – Amazing Ways To Support Autism