Autism Awareness - Why Are Girls Underdiagnosed?

Yesterday, it took L an hour and 15 minutes to transition from her afterschool program to our car. I switched back into ABA therapist mode and started saying phrases such as "make safe choices" as she pelted me with the ball seeds from the trees, climbed over the school fences, stood without hands on top of the very tall playground equipment, and tripped jumped down a flight of stairs. I followed her around, giving her enough space and as little attention as possible, while doing my best to make sure she stayed safe.

This morning she was in a better mood, but I was once again in ABA therapist mood. This time I was saying phrases such as "hands better" when she ran around flapping her arms, or "use your words" when she reverted to her fruit language that no one can understand since the meanings change upon her mood.

When L was nine months old she went from using two to three word sentences to no language. She refused to be touched, would melt down when I changed her, and preferred to sit in a dark corner hidden by our couch banging two blocks together.

At the time her older brother, J, was four and being diagnosed with Aspergers. I was reading everything I could on the subject, and every other mental health subject since S was being diagnosed as well (you can read a bit about her journey here). I recognized the signs in L started her in early intervention before she was a year old. We went GF/CF, put her in OT for sensory, got evaluations for a whole bunch of other services. She was diagnosed with pervasive developmental disorder - not otherwise specified (PDD-NOS) about the age of two. This is a catch all category for kids who show signs of being on the spectrum but are not a perfect fit.

Have you ever heard the saying "too smart for their own good"? I often think this saying was coined for L. When I first started taking her to a private preschool connected to my undergraduate school she was not potty trained, spent most of the day in her cubby with her coat pulled over her head, and would take an hour to transition to class and from class. Except she had an awesome teacher who was able to see the world from my daughter's eyes. She helped her work through the behaviors, and taught her how to interact with her peers.

By second grade the rules had changed enough that I got L back on a 504 plan. They also finally taught her how to read. Yet, no one saw the autism anymore. Between second and third grade L had her meltdown. Her diagnosis changed from PDD-NOS to Mood Disorder - NOS. Yet, everyday I see the same behaviors as I see in her brother, as I saw in the kids I worked with.

Autism is characterized by three main deficits. Where a child falls on the spectrum depends on the severity of the deficits.

Social Skills

No matter what the diagnosis, including PDD-NOS, a child on the spectrum must show a deficit in social skills. Children with Asperger's are often called little professors because the interact like collage professors. Some children show no interest in socializing at all. L is popular. The kids love her. Yet, her teacher complains that she pulls away from her friends. Often, she will just walk away right in the middle of playing with them. She has to have mediation by her teacher to appropriately handle situations. Even her therapist finally agreed that socializing with her peers is exhausting to her.

Communication

Some children on the autism spectrum are non verbal. Other children have difficulty utilizing language, such as the misuse of pronouns. J and myself talk in monotone a lot. When L was three she could have a beautiful highly intelligent conversation with everyone. The person would walk away impressed by the intellect of my child - no way this child was autistic. They could tell in the one minute of talking. I saw the exact same conversation over and over and over. L never varied answers even if the speaker varied the questions. Think about what people say to a three year old. What is your name? How old are you? How are you doing? As an ABA therapist I taught children how to answer these questions. I drilled it into them. L figured it out faster, I never once questioned how smart the kid is. Yet, she was never really having a conversation because she could not vary the order her answers were given. The speaker would just shrug it off and move on - after all she was only three and must have misheard the question.

At nine L will go mute. I am constantly having to say "use your words" or "I need you to speak English". This is not that I have anything against other languages. However, I do not speak fruit. L does. She also is really good and repeating back movies, and will still utilize this in normal conversations. When stressed she will also just start repeating back her favorite movies or episodes. She expects me to remember them as well. She gets VERY UPSET if she wants me to mimic an episode or commercial and I do not get it exactly right - I never get it exactly right.

Repetitive Movements - Obsessive Interests - Difficulty with Transitions

These are all related to each other. They do show differently in each child. In children with Asperger's you typically see an obsessive interest - a specific fixation. J is building an underwater city. He has a journal full of research. He will talk to you about it for hours on end, and if you do not listen he gets very upset and takes it personal.

L only sometimes has an obsessive interest. Currently she does, it is My Little Pony. She does not have the intense focus of her brother. She has toe walked and hand flapped her entire life. Although, the older she has gotten the more it has just been at home when she calms down. She also has major problems with transitions - MAJOR PROBLEMS! Remember the hour and 15 minutes it took me to get her to adjust to afterschool care (where she did not want to be) to our car (where she did want to be)? The transition between them closing down her old school, and having to go to a new school (one she already knew about because her cousins go there, and was at summer camp at) caused her break down.

There is a lot of suggestions about why girls are diagnosed at lower rates then boys. Some of the hypothesis have a biological reason in nature. Oxytocin does affect boys differently then girls, so I believe there may be valid reasons for the disparity in diagnosis. Yet, I do not believe that this is the whole picture. No one questions J's diagnosis. Why? Because he has his noes in a book, cannot throw a football to save his life, and hates sports. He spends his days in the library, and obsesses over the titanic. Yet if a girl acted the same way as him it would be completely acceptable.

Why does it matter? I was diagnosed with Aspergers when I was 24 years old. Up until that point I honestly thought that the entire world was crazy. It never once occurred to me that I was the one who was different. I did not realize that people looked each other in the eyes, that other people's opinions were as equally valuable as mine, and that the reason they could not see things my way was not due to stupidity but a difference in perspective. Once I learned this I was able to go back to get my undergraduate degree and my master's. I was able to began advocating for my children. I am able to function in various positions - and have the self awareness to pick positions that I am better suited for. I also have a community of individuals who I can relate to. So, as a mother with Aspergers - it matters.