“Declan was evaluated for autism today. No matter what happens, I feel they saw the best version of Declan. He did so well. In my opinion, I don’t think it’s autism.”
I was talking to my neighbor after Declan’s evaluation.
The last time she came over to my house, Declan picked up a Matchbox car and threw it at her face as soon as she walked in.
It hit her in the forehead and she gasped. We all did. I didn’t know how to explain. But one thing we knew for sure. Something was different with Declan.
Declan did present his best self at the evaluation, and was diagnosed with Autism Spectrum Disorder. It was then I started the process of becoming an autism advocate.
Becoming an Autism Parent Advocate
Parents advocate for their kids. When Declan and then Catelyn were diagnosed with autism, I didn’t think twice. I needed to advocate for them. Thankfully there were people who lit the path before me to show me where to go, what to do.
Here is what I found happened.
Accept Something is Different
The first step in becoming an autism parental advocate is accepting there is something different. Which is a process in itself.
When Declan was young a lot of his behaviors were excusable. All kids are unique individuals. Declan sure was one dare-devil that grabbed, clawed and pinched. We thought it was funny and even nick named him “The Honey badger.”
Yes, things were hard, but weren’t things supposed to be hard with 3 kids?
The Pediatrician was the first to recognize things weren’t just hard, they were different. Declan needed help.
Not everyone, but some people may go through the grieving process when they realize their children are not “normal.”
I did go through the grieving process with Declan. We had worked with services for one year before Declan was diagnosed with autism. Until someone mentioned the word “autism” I thought we could fix him. When he was diagnosed with autism, I let the word take away my hopes for his “normal” future. (Not to worry – I figured out where I went wrong since!)
I did not grieve when Catelyn was diagnosed. I had learned so much about autism. I was relieved to know we could help her.
One thing I never expected was the variation in the responses from others. Some people are supportive listeners, some will minimize the “problem” behaviors, some do not believe the diagnosis exists and will stigmatize and some people may go through the grieving process, too.
Like Forrest Gump’s box of chocolates, you never know what you’re gonna get.
But to help the diagnosed child and the family of the diagnosed it is helpful to inform others about the disorder who know less. Others will then know things are a little different and find ways to interact with the child.
My neighbor who got hit in the head with the car was far more forgiving of the insult once we knew Declan had autism. Declan is not a bad boy. He is facing something different.
Become Educated on Autism
Learn everything you can about the disorder. I can’t help Declan, Catelyn, myself or others understand what is happening until I learn as much about the disorder as possible.
Focus on the Child
Every child is different. Everyone with autism is different. What works for your child? What doesn’t? What do they like? What are your child’s behavior patterns? These are things you focus on, of course, in order for others to have successful encounters with your child as well.
Inform Professionals Working With Child
Teachers, Doctor’s, Dentists, Hair cutter – anyone that interacts with child will need to know what the child is experiencing and what kind of interactions work best.
For me, I am the happiest when the professional asks me first. Once I have identified my child has autism, for them to ask me “what works best?” is such a relief. Those encounters have been fantastic for Declan.
The primary focus is always going to be on the child. How will the child benefit the most?
I will talk much more about this later. But this is a main goal of parental advocacy. In all areas. I want Declan and Catelyn to be able to go through the grocery store and be understood. I want them to be able to go to school and be given the right tools to succeed. I want them to be able to go to a church and learn about God.
I want people to be aware of autism, accept the differences and create inclusion. On the advocacy path I found and have followed, I have lit another candle to help show the way to gain understanding and inclusion for people with autism.
I am an Autism Parent Advocate