I have Asperger’s syndrome. My eldest daughter is an Aspy as well. We are lucky she got accurately diagnosed.
When Bubbles was three, her preschool teacher told us, “Look, I think there is a problem. I think she is on the spectrum. Let’s get her tested.” The local school system tested Bubbles, for free and in a reasonable amount of time. The testing began with a hour of watching Bubbles play with the other kids in her classroom environment. The testing also ended there. The evaluator thought she “couldn’t” have autism spectrum disorder (ASD) because she was talking and had friends.
If her preschool teacher had not practically begged me to get Bubbles tested at the Autism Center, we might have left it there and assumed our daughter was a “diva”, “high-strung”, and “quirky”. Instead, we paid out of pocket (it was not cheap and the wait list was long) and got a full work up. Lo and behold, our daughter was an Aspy.
I am not slamming the school system. For one thing, we are fortunate enough to have an excellent school system here with superlative teachers. It is simply that, thanks to funding cuts, they have very few resources with which to help a lot of children. Even when the signs of ASD are more “clear”, it can take more than a year for a kid to get through testing in public schools, no matter how good and/or dedicated the staff. Our friend’s son, Einstein, went the public school testing route. His testing started in Kindergarten and they finally got it all done in second grade. His parents are now having to pay for private therapy and he is way behind Bubbles, who was diagnosed and started on therapy when she was four years old, in terms of coping skills.
The biggest problem is that more doctors and educators are not trained to “see” ASD in females. They are taught it is a boy’s disease, and it presents only in certain ways. This means ASD in girls is wildly underdiagnosed.
Here are some of the most salient ways female Asperger’s differs from the male variety:
- Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood, 2007).
- Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined and many have one special friend.
- In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.
- Evidence suggests that girls have better imagination and more pretend play (Knickmeyer et al, 2008). Many have a very rich and elaborate fantasy world with imaginary friends. Girls escape into fiction, and some live in another world with, for example, fairies and witches.
- The interests of girls in the spectrum are very often similar to those of other girls – animals, horses, classical literature – and therefore are not seen as unusual. It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests. Many obsessively watch soap operas and have an intense interest in celebrities.
“The presence of repetitive behaviour and special interests is part of the diagnostic criteria for an autism spectrum disorder. This is a crucial area in which the male stereotype of autism has clouded the issue in diagnosing girls and women.”
If you have a quirky little girl (or if you are a quirky woman) it might behoove you to get tested for ASD by a specialist. The social, economic, and mental health consequences for not being diagnosed can be severe.