My husband and I realized in our daughter’s early elementary years that her development was different from other girls. Her toddler younger sister’s motor planning and self organizational skills far exceeding hers was the red flag that finally sent me down a investigative path. Adding to these observations, I majored in special education in college, and my husband has many of the characteristics of an “Aspergian”.

We began with a referral to a developmental pediatrician who confirmed that she had gross and fine motor delays as well as sensory issues. We spent several years in physical and occupational therapy with her, and later, in sensory therapy. She was given the diagnoses of Sensory Processing Disorder, Sensory Modulation Dysfunction, Developmental Dyspraxia, and Auditory Processing Disorder. In future articles, I will break those down and try to explain all of them in greater detail.

By the time Ella turned 9, her public meltdowns were still very much in evidence, and her coping skills had fallen below the level of her 6 year old sister. These issues made me question whether a diagnosis of Asperger’s might be a good fit for her, though she’s very verbal and relatively socially savvy. We decided to have her evaluated by a professional private psychologist, who diagnosed her with Asperger’s in May of 2009. She used the Autism Diagnostic Observations Schedule (ADOS) test, which is often spoken of as the “gold standard” for diagnoses and assessment of children suspected of being on the autism spectrum.

During the summer months, my daughter’s school did an achievement test, an IQ test, and a speech and language test, looking for learning disabilities as well as for an Autism Spectrum Disorder. She scored in the average range for everything, and at the IEP meeting, my husband and I were told that because she does not “appear” to have any special needs that she would not be eligible for any special services at the school. I have since learned that the school must, by law, recognize the diagnosis from the psychologist. My friend Shari, a parent advocate in the Florida school system, had this to say about our quandary at school: “If she sits stoic in the classroom for six hours a day, it doesn’t prove that she doesn’t need it [services].” I was also encouraged to make an appointment for my daughter with a developmental pediatrician, to have a medical diagnosis to support the psychologist’s diagnosis.

Most girls don’t get diagnosed with Asperger’s until sometime in their teens, because they do not tend to stand out from others in the school system. Dr. Tony Attwood, in his book Asperger’s and Girls says this about girls with Asperger’s: “It appears that many girls with Asperger’s Syndrome have the same profile of abilities as boys, but a subtler, or less severe, expression of the characteristics. Girls are more able to verbalize their emotions and less likely to use physically aggressive acts in response to negative emotions such as confusion, frustration, and anger.”

In Ernsperger and Wendel‘s book Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges, one girl interviewed for the book states, “To my teachers, I was a perfect, straight A student who was willing to help. To my parents, I was selfish, quirky child who couldn’t care less about others. I was angelic for my teachers who commended my grades, and demonic for parents who reprimanded my unacceptable behavior. This made it hard for my parents to seek professional help for my disorder since the rest of the world saw me as perfectly normal.” This sort of double life is very common among girls with Asperger’s. It is the exact sort of double life my daughter leads. It is very common for girls with Asperger’s to mask their differences and challenges from others. As a result, their educational and emotional needs may not be seen or taken seriously.

The Autism Spectrum Disorder diagnosis has not existed for very long. The diagnosis of Asperger’s is even newer. As a result, most of the general public is unaware of what ASDs are and are not. Chances are, if people are familiar with Autism or Asperger’s, it is because their son, their brother, or their neighbor is on the Autism spectrum. It can be very difficult to find validation and support for parenting a girl with Asperger’s. My hope is to share, educate and empower more women and daughters through articles I share here at Special Mom Talk and through life experiences I share on my blog.

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