I wrote this 2 years ago, in honor of World Autism Awareness Day, and ended up not sharing it…Until now.

“April 2, 2011- I thought long and hard about what to write for today. I came up with this… an honest look at what autism means to me.

Autism means heartache. It means fear. Fear of the unknown, fear of vaccines, fear of the future, fear of stagnation, fear of stigmatization, fear of failure, fear for safety, fear for when I’m gone. It means a family changed forever. It means loss. It means sadness, and anger, and hopelessness. It means worry, and panic and anxiety. Autism means pain beyond words. It means planning, and hoping and wondering and wishing. It means praying in tears for a cure, or even just for progress. It means a broken relationship. It means behaviors, and stims, and prompting, and teaching. It means uncertainty. It means waiting. It means denial, and repression. It means powerlessness, and inability. It means guilt. It means inadequacy, and unbearable hurt that I can’t take autism away. It means tough love, and pushing for more, and not giving up. It means the life I wish for my brother may never happen for him. It means the relationship I wish to have with my brother may never happen for me. Autism means making the best out of what you have. It means looking for the silver lining in everything. It means quirkiness. It means screaming and crying and tantrums and aggression. It means repetition and routine. It means triumph in every small victory. It means pride in every accomplishment, because they were so much harder to achieve. It means being aware. It means devastation. It means despair. It means frustration and hatred and boiling blood. Autism means sorrow and longing. It means different. It means embarrassment. It means never being satiated. It means advocacy and fighting and educating. It means a life-long battle. It means silliness. It means being perplexed and stuck. It means dichotomy. It means ambivalence. It means being misunderstood. Autism means caring, and compassion, and sympathy and empathy. It means a sweet smile. It means hugs and kisses worth more than a million bucks. It means redefining. Redefining success, redefining hope, redefining progress, redefining values, and strategies, and priorities. Autism means struggle. Struggle for the afflicted, struggle for their families. Autism means strength. Autism means weakness. Autism means faith. It means a new direction. It means helping. Autism means broken hearts. Autism means passion. It means finding joy and elation in every feat. It means never giving up. Autism means unconditional love.”

It was interesting for me to go back and read where I was at in 2011. I remembered writing about the gut-wrenching pain of autism, and just how many emotions a person can have about it. I didn’t remember my piece being quite so… What’s the right word?….depressing?? I can see that I’m in a different place, emotionally, now than I was back then. Not that the deep pain of autism has disappeared! No, I don’t suspect that it ever will. But I have seen so much progress in my brother that it’s allowed even more hope and excitement and pride to come in. (Those have been there all along, by the way.) All of the hardship and turmoil remains. I don’t think I’ll ever NOT be sad that I can’t have the type of relationship with my brother that I would like to have. But, I am just so overwhelmed with happiness and gratefulness for the relationship I do have with him. And I don’t think I’ll ever NOT be heartbroken that he may not have the life I wish he could have. But I’m determined (like the rest of my family) to make sure he has the best life he can.

He makes me smile unendingly. He makes me laugh, and beam, and he motivates me to do what I do. Autism is a beast. But it will never take away how remarkable my little brother is. And, let me just say, he’s pretty darn remarkable!

Tags: ASD, autism, autism awareness day, autism awareness month, big sister, little brother, WAAD