This is Autism Awareness Month and before we can look forward we have to take a look back. Flashback 5 years ago today Autism won. When I think about that day I was so frustrated because I was trying to desperately get our son Johnny into specialized speech therapy to get the speech going. I only wanted to get Johnny the right help that I thought he needed but he as other parents of children know and expect, sometimes its not just meant to be. Its hard sometimes to get myself to realize that its only one battle in my son’s life…in our life. Here is an excerpt from 5 years ago and I think I captured the frustration I felt at times and the desperation. Lucky I was born stubborn.
“What does “his” Autism look like during moments like this? Johnny looks at other things in the room instead of at the person talking to him. He starts fingering or playing with the item in front of him instead of answering the person’s questions about it. He gets distracted by the touch, feel, sound of an object and doesn’t want to move on. He gets fixated on trying to fix the broken toys that are in the toy bin or bag instead of moving on. He looks like he doesn’t comprehend the questions let alone understand what he is suppose to do. He speaks very quietly almost mumbling because it almost seems like a monumental effort to talk. The Autism is now very much present in these moments.”
When I think back at how many other therapy appointments I sat through with Johnny whether it was speech or occupational and would sit and hope beyond hope that he would participate in the way that the therapist wanted him to. I hated wasted time. He was getting older and I kept worrying that if we don’t find a way for him to learn to speak and “just be” in this world how will he move forward and have a life? He is 5-1/2 and the words of doctors kept swirling in my mind about the benefits of early intervention. The thing is Johnny has to be willing to benefit from the intervention but at the same time is what we are doing the best intervention?
So flash forward 5 years and Johnny is 9-1/2 and I recognize that anxiety plays a big part in any kind of therapy or learning session. Johnny’s mind is always thinking about many things and it might not be what you are thinking about. He can talk now and its like he has a constant need to process and think out loud about what he is learning about his environment. Therapists get the most out of him if they find out ahead of time what he is very interested in and use that in therapy. When Johnny is anxious he is the king of re-direction and will bring up other things to talk about which is his way of saying “its too much or I need a break.” When he was 5 and having challenges speaking he would just grab toys or objects in the room, open cupboards and appear to be ignoring the therapist. Today he doesn’t have to show his curiosity by touching everything, instead he can talk about it. This is Autism to Johnny and its still there but now as parents we understand what is happening. We understand how to let the therapists know and appreciate what is happening and not to make grand assumptions. Johnny is learning and taking everything in and is just showing it and his anxiety in different ways.
I often tell teachers that if it doesn’t make sense then its Autism in big flashing letters. Why? Because when they or us as parents are trying to teach Johnny we are not Autistic. We have neurotypical brains trying to make sense of another way of thinking. But when we try and learn about Autism and how Johnny takes in information and thinks then things start to make sense. Autism begins to make sense.
If I could go back in time and talk to the me from 5 years ago I would tell her the same advice. Take a deep breath and watch and listen. No really watch and listen. Its going to take time to learn a different way of looking at the world and he will be okay if you try.