7 Steps to Become an Autism Parent Advocate

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“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.

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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.

Grieve

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.

Tell Others

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?

Inclusion

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

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17 thoughts on “7 Steps to Become an Autism Parent Advocate

  1. I love this, thank you for sharing! I am hoping to soon have the space in my life to become an “official” advocate in the area of Schizophrenia, which is near and dear to my heart!

    1. Sure! Thank you for reading! I’m hear for support – I can listen (or read) if you need someone. Good luck!

  2. Greetings! Thanks for reading my blogs. Last week I wrote a short commentary about an author discussing her book about Rosemary Kennedy. Even though I’m a Sibling and Autism Advocate Activist for my brother Stephen I can see some parallels between how my parents handled having a developmentally disabled son (this was back in the 1960s before Autism programs and services) plus my own efforts to make sure that Stephen has the best Life possible. Perhaps when find time you can read my blog post. Or you can put Stephen Palmer or Autism into the search box on Espirtu en Fuego to share our lives. Thank you.

    https://dancingpalmtrees.com/2016/10/18/rosemary-the-hidden-kennedy-daughter/

  3. Great post. I know people struggling with their child receiving a diagnosis. Mums avoiding all social situations with the child. In fact she’s avoiding all social situations and people at the moment. I (stupidly and without much knowledge) last year tried to talk to her about her son and I regret this a lot. Dad brings the other child to things now. I’m hoping that leaving the door open will be enough for her to eventually come back inside 🙁

    1. Thank you! It took me a long while to bring Declan out. I wasn’t sure what was happening and the only thing I could guarantee was that the unexpected would happen. On one outing to a friends house, he “smeared.” It was awful. Our family splits up for most engagements as well. If we do go out as a family, we take 2 cars and one of us is always shadowing Declan – so not much socialization is had. It is very frustrating. I know things are getting better because I see a lot of progress. I think it is great to keep the door open. I know where our “safe”places are and am so thankful those friends kept their doors open to us 🙂 We are slowly beginning to walk through a few again.

  4. Robyn, as I learn to be an advocate for Tyson, I come back to your blog time and again just to glean information from you as well as see none of us are alone in our struggles with understanding how Autism affects each of our specials. I love the new look of your blog. I’ve been out of touch for a while, but I always make sure to see what you have written. Hugs to you and yours~

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