Having to Fight for My Daughter to Receive an Autism Spectrum Diagnosis
Yesterday my daughter had a re-evaluation for an autism diagnosis. I knew right away it wasn’t going to go well as she was in “role-playing mode,” successfully playing out the role of “patient.” She made eye contact, she smiled, was engaging, and she responded to her name. The doctor spent about five minutes with her before stating that he agreed with his co-worker, that she was not on the spectrum.
I became visibly agitated as I have been chasing my tail for over a year in attempts to get a diagnosis. He even went as far as to ask me what I would get out of this if she was autistic. Perplexed by his question, I remained calm and quickly advised him that my husband and I are way over the income limit for SSI, so this wasn’t to chase for a check, if that was what he was thinking! I sensed he relaxed a little, but he followed up with a second question asking why this diagnosis was so important to me as I had already “bullied” my way into receiving autism services for my daughter; so in his mind, “What more did I want?” I explained I want my daughter to know who she is! I want to be able to provide her with the tools to succeed!
After his questions, he got back to the ADOS test with my daughter. I could tell he was more intuned, less dismissive, but not completely sold. He called her name to see if she would respond, she looked up and smiled then said, “it’s mom’s turn to do it, then it’s dads turn.” The doctor then grabbed a baby doll and she took it, and stuck the bottle in its mouth and then told him, “OK, get the bathtub,” and at that point, the doctor froze! He looked up and said, “she has remembered the ADOS test step-by-step so it’s tainting the results.”
What’s interesting about this, is the test was given eight months prior when she was 3, at a different location, with a different doctor, but she remembered the “script” verbatim. She even knew the room was set up exactly the same as the last location with the same testing materials — I didn’t even notice this. The doctor said he had never seen anything like it. He then started to change it up a bit, asking questions from the 6-year-old ADOS test. For example, he gave her two babies and asked if she could tell him something different about them. At that point, she tuned out, no longer made eye contact and didn’t respond. As far as she was concerned, the “play” was over as he went off script! The doctor mentioned she should at least be able to tell one baby was black/brown and the other was white. When he asked her about friends and how she knows they are her friends, she said something like, “they are big friends and small friends.” She was no longer engaging and was a little aggravated. We ended up walking away with a provisional ASD diagnosis to be reviewed again in six months!
Major win, as I read somewhere that only a small percentage of girls are diagnosed before the age of 6 and these undiagnosed girls are referred to as “the lost ones.”
Getty image by BelindaPretorius