The first time I had Grace evaluated the Early Childhood Intervention people came to our house. They came, played with Grace, watched her at school and then upon leaving my home asked me if I had trouble with postpartum depression. They missed every single sign. Then they blamed me. It took all I had not to hold the weight of Grace's behavior on my shoulders. Yet we carried on. Pursued private therapy - as much of it as we could find.
We took her to OHSU - to the CDRC - autism research clinic. They evaluated her and found nothing that indicated she was on the spectrum- NOTHING. How was this possible? I went through the report, but I just wasn't sure what to look for. I found it confusing and lacking in information. The main part of the report was from a speech pathologist, an OT, and a developmental pediatrician. There was nothing in the report from a psychologist. I recently found out that the "psychologist" who administered her ADOS (the main test that they do to determine an autism diagnosis) was a STUDENT. A person in training - not even a real psychologist. I brought Grace to OHSU because I thought it was the best. It turns out we did not receive what we thought we did.
Grace was a darling little blonde child with blue eyes. Her hair was always fixed. She was always dressed to the T. I truly believe that these practitioners "played" with her too much while testing her - thus skewing the data.
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| Grace - at the age when we went to CDRC |
So we settled on OCD. Which Grace does have. Almost all autistic people have some form of OCD. This at least gave her some protection at school - it was something that could be treated. Medication helped. But it wasn't the whole picture and I knew it. Then I started to learn more about autism and girls. Specifically about high functioning autism and girls. Tony Atwood has done some great research about how girls manifest the symptoms of autism differently than boys.
http://www.tonyattwood.com.au/
Research is showing that girls are often missed, or diagnosed much later because they tend to act more typical than boys on the spectrum. They tend to play more typically, focus on things that are more "normal", and are able to imitate behaviors of others in a way that makes them appear more socially appropriate. However, they don't understand the behaviors that they are copying - and so they end up feeling isolated and alone. In fact, the diagnostic criteria for autism is set up for boy behavior and not so much for girls. Making it very difficult for girls on the high end of the autism spectrum to be diagnosed at all. There appears to be a bias in autism toward boys.
The woman who diagnosed Grace has a Doctorate in psychology. Her area of expertise is autism and she is well known and respected throughout the state. One of many areas she is well versed in is autism and girls. We were truly blessed to find her and have her evaluate Grace. I will post more about her findings at another time.
I believe the lesson here is for all mothers to listen to their instincts. Mothers know. We know our children. We should not let "experts" dismiss our concerns after seeing our children one time for only a few hours. If we have concerns, if we know there is something wrong, then we are usually right. Don't let someone make you feel small, or make you feel like a bad parent simply because they were too short sighted to really see your child. You and only you have the power to change your child's destiny.
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| Grace pulling her cousins in a wagon |
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