Now what

The other day another doctor disappointed me. I’ve had my fair share of medical doctors not listen or not properly treat me or lie to me. So I’m getting used to disappointment in doctors. But life changed things up and this time it was the psychologist evaluating my daughter who disappointed me. My husband and I went into the office Monday evening to hear the results of the autism evaluation.

My daughter is preschool age and had already been diagnosed with sensory processing disorder and low muscle tone. I was expecting her to be diagnosed ASD level 1 like me. That didn’t happen. According to the psychologist she’s very verbal and has a strong vocabulary so she can’t be autistic. And she didn’t stim in front of the psychologist and the examiner so that means ‘she can control that behavior’ and it’s not stimming but a behavioral issue! She did get diagnosed with unknown anxiety disorder (by the way about 40% of autistic children have anxiety disorders) and developmental coordination disorder.

I was so frustrated when the psychologist said my daughter uses hand gestures and that autistic don’t use gestures. I use hand gestures and I am autistic! And back to the verbal thing there are autistic people who are very verbal, I’m not one of them but they do exist. And I have a strong vocabulary and am autistic. Gasp! And I don’t stim all the time and I can control my stimming but it’s exhausting. My daughter’s stims are noticeable only when she’s really distressed. She wasn’t distressed in the quiet room where evaluation took place. Her subtle stims include chewing her lips and humming. I have no idea if the evaluators knew to look for those things.

And I’m mad at myself for having no spoons left to process what the psychologist told me and to advocate for my daughter. It took so much energy to mask my anger and frustration but according to my husband it was obvious I was upset. The psychologist even asked if I was okay. At that point my daughter walks away from the toy blocks and stands next to me, she doesn’t look at me, she just says Mama. I tell her I’m okay and she walks back over to the blocks. My sweet girl was comforting me in her own way. And thankfully I didn’t blow up and say something rude to the psychologist.

I was so upset and wanted to point out to the doctor the quiet, vocal stimming my daughter was currently doing and the subtle hand flapping right before we left the office. My daughter spent lots of time setting up a scene but very little time playing with the toy person while the psychologist was going over the evaluation results. I just wanted to scream in frustration because I felt she did not see my daughter at all. She even talked about how she briefly considered combative disorder (the up to date term is oppositional defiant disorder). But my daughter’s violent outburst weren’t frequent enough to qualify for that diagnosis. Part of me wondered if she considered that diagnosis only because my daughter is multi-racial. And I wish I had time to go over the history of racism and sexism in mental health.

And I could go on about every thing the psychologist was wrong about but that won’t help my daughter. I’m now even more driven to share about how autism can look different in girls. And I wish I could go do research and develop a test for how to identify different presentations of autism. I’m not sure exactly what the next steps I need to take to help my daughter. All I know is I’m not going to give up.

Published by deannajv

I'm autistic. I'm also married and have a daughter. I graduated with a bachelor's degree in Family Studies and Human Services.

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