So I started and stopped this message many times. Unsure what I wanted to say. I have lots. Haha but I think is what has been most challenging for my family.
So we have 3 children.
Eleonore is 7 1/2 has anxiety, ADHD, and Autism.
Phineas 6yrs old is neurotypical but has a possible muscular dystrophy (still in testing stage).
Hudson is 4yrs and has autism. Our diagnosis for Hudson came easily. He did have a speech delay and many behaviors but they quickly diagnosed him and he is almost a year into full-time ABA and had a year of speech and OT before that.
But that was very different for Eleonore. She was super verbal, read early on and was quiet and well behaved. She had emotional outbursts but seemed to save the big emotions for home. She is a super rule followed and is hyper aware of her surroundings. Her anxiety kicks into hyperdrive out of the house. So in a class, Eleonore is that child who appears to be following along behaving herself. A teacher’s pet one might say. Inside my child is being missed. She misunderstands so much. She uses her intelligence and so many adaptive behaviors to “fit in” a great skill yes but as we get into tougher social situations and harder school work that is getting harder and harder. We had her evaluated 3 separate times before we found someone willing to take our concerns about her seriously. We would hear oh she is shy. Girls can be quiet and shy. Or but she speaks so well. She is so smart etc, etc. it was frustrating. It still is. I fight with her teacher to fully understand her. I struggle with finding her an appropriate therapy setting for a super people pleaser that will take months to really show her true colors. Her ADHD is so severe without meds she is unable to function. Her therapist now wonders if she has an auditory processing disorder. She acts many years below her age. Is super impulsive and gets a wild look sometimes. But she goes to school and anxiety takes over and her hyperfocus on the rules and schedule make her look like the perfect student and here she is falling farther and farther away from her peers. It’s frustrating.
I wish more was known about girls on the spectrum. Especially higher functioning girls. I wish we didn’t have to fight for 4 yrs just to get her the right diagnosis. I can’t think about the past and wishing she also had early intervention but man I think it would have made a huge difference in her now.