Lately I have been struggling with knowing what’s right for my son. We are lucky in Minnesota to have many therapies available for kids with autism, but not all are the right fit. You see, my son has nonverbal autism and that makes things tricky.
We’ve tried early childhood special education, Fraser, and in-home applied behavioral analysis (ABA). I liked things about all of them but have had some issues as well. My son is on the “severe” side of the autism spectrum.
Though I hate to use that word when talking about my son, it’s hard to describe how autism affects him without it. He is sweet. He is loving. He tests at low developmental ages, but we know how smart he is. People, even those who should know better, tend to overlook intelligence in kids that are nonverbal. He understands, but he can not make his body show you that he understands. One book that gives great insight into the world of nonverbal people with autism like my son is The Reason I Jump by Naoki Higashida.
The insight this book gave me guides my choice of therapies, and how they address my son’s ability to communicate. When he started his current speech therapy, they wanted to start with signing. This is a common tool used to help nonverbal children bypass the difficulties of verbal speech and communicate with simple sign language. But my son had been working hard on PECS (picture communication) for over a year and was making progress.
I had my doubts but ended up relying on their expertise to know what was best for my son. We tried signing. Nine months went by without my son picking up a single sign. Obviously, this was not working. So I went against their recommendation and bought him an iPad.
We’ve seen so much progress with it. He started communicating wants and expressions, and showing understanding of what others were saying to him through the app – Proloquo2go. So his school therapists decided to try it. With them, progress has been slow, with months spent on one picture. Not a series of one picture communication at a time, but one picture. Total. He spends all day at school pushing a picture of popcorn for every kernel of popcorn he gets. This does not reflect my son’s true ability.
At home, we started with a field of four pictures strung together. He does great with it, crafting complete thoughts. After all, our goal is to teach him to communicate, not to push pictures in order to get a reward.
So I decided to talk to another speech therapist to see if this was a typical way to teach communication on an iPad. Immediately, I could see we were on the same page. She told me the first thing she would do was have a salesperson come out with a bunch of Augmentative and Alternative Communication (AAC) devices and pick the best one for my son, ones that insurance would cover. Then she would start teaching things one step above where he is at to get him to learn how to open folders and navigate the iPad. Clearly this will achieve our goal of teaching my son to communicate, freely, using this adaptive device.
But I am concerned that the team at his ABA school will not collaborate with another therapist. I don’t want to see him stuck, spending his days pushing pictures on an iPad to get rewards from his teachers. That’s not functional or building life-long skills.
I’m lost. I want to follow my intuition, believing in my son’s abilities and choose the tools that will truly help him. Finding a support team that can see the potential in a nonverbal child with autism is difficult. Too often we sell our kids short and teach down to where we think they are, instead of where we want them to end up.
It’s so hard to know what’s right for your child. But you never know what your child is capable of until you try. I will keep leaping and have faith in my son.