Why I'll Never Stop Trying to Understand Autism

Dear Autism,

I’ve been trying to find the words to write this letter to you for a long time. I’ll be honest — I’ve struggled. You’ve been a puzzle to me (no pun intended). When my son, Drake, was just under a year old, I searched you out. I read about your poor eye contact, improper play with toys and developmental delays. The more I learned about you, the more I read. I Googled every possibility. I said to myself, “no.” Perhaps Drake has hearing loss; maybe that’s why he rarely acknowledges me when I call his name. He is spoiled, that’s it! We baby him to much, and that’s why he still can’t hold his sippy cup by himself at 1 year old. But you persisted. No matter how much I tried to ignore you, you continued to prove yourself to me.

I often wonder what’s involved in your process of choosing people to affect. I imagine it’s sort of like standing on a hill, looking at a valley full of wild flowers. They all look the same, yet they’re all different. Was it a random plucking, or did you see that one flower that stood out a little more than the others? How did you choose Drake? I, personally, believe God was involved. I believe you would not have been able to “pick” Drake without His OK.

It’s been almost one year since the day we received Drake’s autism diagnosis. I remember pulling away from the appointment with an urge to conquer you. I was resolute. My mission was to hunt you down and make you listen to me.

Days, weeks and months have passed, and I’ve fought as hard as I possibly can to bend you to my will. It wasn’t until recently that I realized you’re here to stay. I don’t know if I will ever understand you. You, Autism, are a complex being. You cannot be pinpointed because you touch each person differently. My Drake cannot speak, but he’s sweet, affectionate, a good nonverbal communicator and not aggressive. There are so many children and adults whom you affect more severely. You cause them to hurt themselves and have extreme aggression and major meltdowns. You cause them to have horrible motor skills and sensory issues.

I don’t understand. I’m sure there’s a method to your madness, but for the families who are affected, you can be so difficult. More important, you’re difficult for those who carry your diagnosis. Their struggle to be understood must be overwhelming.

I’ve gone through so many emotions over the last couple of years while dealing with you, Autism. I’ve watched my precious child struggle with you. I’ve noticed other children treating my child differently because of you. I will not quit. Yes, I’ve accepted that you are part of who my child is, but there is more to Drake than you.

Drake has overcome so many of the obstacles you’ve placed in his path. I have the privilege of seeing the joy on his face when he completes a task easy for other children. I’m so in love with Drake’s sweet-spirited personality and his laid back attitude in most situations. I thank you for allowing Drake’s personality to shine above any other issues he may face. One day, I hope you allow him to live independently. You may always be a part of Drake’s life, but until my last breath, I will fight to make sure you allow him to thrive.

I will anxiously await your reply. I hope you’re not offended by my honesty and overwhelming feelings. I’m just a mom trying to understand you so I can better understand my child. We’re in this together now. Help me so I can help my son.

Regards,

J. Powell (Drake’s Mama)

This post originally appeared on Walking With Drake.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.