As parents, no matter what the situation, we are supposed to be advocates for our children. That’s a given. One phrase I hear often from professionals – I refer to any school staff, social workers, physicians, etc. as “professionals” – is “You know your child best.” But is that just a saying, or does that indeed mean I am the expert when it comes to my child?
When my 9-year-old son, Karson, first started experiencing concerning behaviors, it seemed like average, age-appropriate behavior—a child learning boundaries. I had already raised four children who are now adults, so initially, it didn’t seem out of the ordinary. When I realized that it was something beyond that, I’ll admit I was lost. I didn’t know what to do, and I depended on those “professionals” to guide me. I couldn’t understand why Karson was struggling so much with listening to adult direction or playing with other children. Why did my child completely lose it and melt down when asked to fill in a sticker chart? Why did he stand and scream that he needed help or that he wanted someone to play with instead of approaching someone for help? Why, whenever any consequences were imposed, did my child destroy everything in sight? I asked for help from my school district, and I was given the “let’s wait and see” response. They told me to contact a mental health facility and put him in therapy. He was 4.
Karson’s first evaluation by a psychologist gave us some answers. He was diagnosed in 2021 at age 7 with ADHD and anxiety. She was also the second professional who had questioned whether or not he was autistic and suggested further testing. Again, I asked for help. How do we determine if a child is autistic? It seems like no one had the ability to provide direction. I call it the triangle: you need the parents, the school, and the pediatrician to determine whether or not further testing should happen. But the parents and the pediatrician aren’t at school, and the teachers and the pediatrician aren’t in the home, and the pediatrician only sees a child for 20 minutes once a year unless they’re sick. And how should a parent know if what they’re seeing is considered a characteristic of autism? The sheer lack of concern for finding answers is heartbreaking.
Karson was finally formally diagnosed in December of 2021 at age 7 ½. This child went three full years in a neurotypical space with neurodivergent needs, which were obviously not being met. Prior to this diagnosis, I was told (by school professionals) “This is your fault; you aren’t supporting your child; you are too demanding” (because I asked for an aide, and then when the first one seemed problematic, I asked for a new one); we will call Child Protective Services if you continue; you will be arrested if you try to step on school grounds while your child is suspended (in the 2nd grade).
My first words after the diagnosis were, “You do understand that he’s been autistic the whole time, right?”
Once we had the diagnosis, I began to research everything I could about Autism, ADHD, and anxiety and how they were all related. In January of 2023, a staff member mentioned Pathological Demand Avoidance to me, and after looking it up, I realized that it all made sense. Finally, we could now understand how his brain worked and what this child was dealing with on the inside. I listened to podcasts, searched websites, and read books. I became the expert on my child. I worked so hard to share everything I found out about it with the entire Special Education team. Unfortunately, it didn’t do any good. They refused to lower expectations. My son was deteriorating in front of me. He regressed to sleeping in my bed and needing me to dress him. He was still constantly “in trouble” at school.
He was spending more and more time in the “calm room” at school, which is nothing more than a padded cell.
He started using very insensitive language when his nervous system was activated and other new behaviors like urinating on the floor. He was so traumatized by being put in that room that he begged the staff to physically restrain him as an alternative. In March of 2023, my child, at eight years old, was restrained nearly every day. It got so bad that I started to allow him to use his iPad at school. From the middle of April until the end of the school year, he spent nearly every school day sitting in a corner on his iPad. He refused any interaction with staff.
He went most days without eating at school or even using the restroom.
I requested, multiple times, for staff to learn about better ways to help Karson. I offered to purchase books for the staff and personally meet with them to teach them how to understand him better. I provided research, information, and literature from professionals. Guy Stephens offered to speak directly with them. Diane Gould of PDA North America offered her assistance. They just kept telling me I needed to take his iPad away because that was the problem. No one wants even to attempt to learn. No one even bats an eye when I say he’s been traumatized. So, my question is, who do they need to hear it from? If it’s not enough for me, the expert on Karson, to say it, or those who are experts on the subject, then who?
