Autism and Self-Advocacy: Trusting that my son can speak for himself

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My son has been on this earth for over 9 years, and Autism is an integral part of the person that he is. It has helped shape him into a unique individual who perceives the world in fascinating ways. He sees things I would never see. Autism has also presented him with some challenges. I still recall so vividly the first time he asked me, “What is Autism?” I tried to be empowering with my answer but also honest about how it may cause him to have to work harder at some things. The conversation helped him understand himself better and why he feels frustrated at times. He also became excited about his “special brain” (as he calls it), and he has embraced his Autistic identity.

At the beginning of our journey I was the one who spoke and advocated for him. As he grew older we began to tell his story together. One of the ways we did that was by starting a yearly ritual of explaining Autism to his classmates. He and I decided together what we wanted to share. I was so proud of him and his 1st grade classmates when I first watched them have a honest conversation about being different. You are never too young to learn to be kind and accepting of one another! As I said in a previous post:

I believe honest dialogue about special-needs is crucial to acceptance, and that children can be surprisingly open-minded about diversity and uniqueness. If you tell them, “Different is cool,” they will believe you. The trick is to explain those differences in a matter-of-fact and positive way, before they can be affected by the prejudices of the world. (It also helps if you do it in a voice like Matt Smith’s Doctor when he said, “Bowties are COOL!” And yeah, I totally made this picture.) 

bedifferent3

So my son and I keep talking. We think it is important work, and it helps others to learn and understand. Another way I continue to try to affect positive change and reduce stigma is through writing. However, I never write anything without his permission, nor do I share anything that I think would embarrass him or violate his privacy.

There are reasons that in the past when my son has shared his story it has been with my assistance. He was very young, and I wanted to help make sure he chose words that would help others understand and accept him. I also wanted to help protect him from ridicule and bullying.

But I can’t protect him forever. My son is growing older, finding his own way and taking charge of his own narrative. I recently learned that on his own he chose to educate some of his classmates about Autism. A character in a book they were reading was described as having Autism, so he shared some facts about it as well as how it affects him personally.

I must admit I was nervous when I learned about it, because we had not yet had the Autism talk with his classmates this year. I was used to a carefully crafted presentation that I helped prepare. I wondered what my son had chosen to share. I was worried it would change how the other children viewed him and cause them to see him in a negative light. I wanted to help make sure they saw not only his struggles but also his strengths. I felt compelled to swoop in and add to the conversation.

I shouldn’t have worried. This was the some of the information he shared via slides of his own creation. (Did I mention he is NINE? Amazing the technological skills that kids these days have!)

HowAutismAffects

When I read this slide I was incredibly proud of his courage and honesty. I found it interesting that he chose to focus on the positive ways that Autism affects his life. However, I glad that he did. I feel that the way Autism was portrayed in the book they read could have helped contribute to the stigma and “other”-ization of people who are differently-abled. By speaking up and sharing how Autism affects him personally my son is advocating for not only himself but is also serving as a voice for the marginalized in general.

He didn’t say what I would have about Autism. He said it better. It is HIS story, and he can tell it how he wants. He is growing into the person I hoped he would become: a strong, kind young man who is proud of who he is and who wants to help others. A person who is accepting and who celebrates uniqueness. A person who has found his own voice and is willing to use it. I have to trust that he is capable of doing that on his own. And yeah, it is scary. It can be hard for a mother to let go, especially if we are used to having to protect our children.  The world can be a cruel place. What comforts me is that the world is made better as long as there are people like him who are willing to speak out and stand up for what they believe in. My son is compassionate, has a strong sense of right and wrong, and regularly defends classmates that he believes are being bullied. Now he is also a voice for Autism Acceptance, and I couldn’t be more proud. I look forward to seeing what he chooses to accomplish in the future, and hearing what else he has to say as he tells HIS story. It has been Seriously Not Boring so far!

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