What Parents of Kids Without Autism Can’t Understand

Because it’s Autism Awareness Month, I feel like it’s worth revisiting a story we posted last fall, about my friend’s sister. She has four children, ages 15, 13, 8, and 4. This woman’s 13-year-old son has a severe form of autism and a mood disorder with psychotic episodes; doctors have told his parents that their son is a very unusual case. As a result, life is extremely challenging for the entire family. Because their son is prone to frequent and uncontrollable outbursts, they’re all having a particularly difficult time in the condo complex where they moved not long ago for his mother’s job as a biotech scientist. Her heartbreaking Facebook post, which she allowed me to share, strikes me as the kind of thing every parent should read, particularly if he or she doesn’t have a child with autism–or any other disability or mental illness.

“I would like to say something to those people in our community who look at my husband, myself, and our disabled son in disgust or shout out your windows for us to just keep him quiet. He is a minor inconvenience to you. You get to go back to your lives, travel as you please, eat what you please, and go about your merry way. Imagine what it is like for us, constantly struggling to keep our son safe. Imagine what it is like for our other three children, whose friends’ parents won’t allow them to come over while our son is home, who are constantly told they can’t go places because it’s too difficult, and who often can’t make their needs heard above his yelling. But most of all, imagine what it is like for our son, whose level of anxiety is so great, whose suffering is so enormous, that he is driven to cry, driven to scream, driven to bang his head and bite his arms and legs. Have you ever in your life felt so much pain that you were driven to that? Be grateful for what you have, for being born with a normal functioning brain, and maybe you would consider being helpful instead. We could always use a home-cooked dinner, an offer to take one of our other children to a movie, or just a smile of support.”

Another reason I wanted to post this again is because right now, the story has a happy ending: Her son is on a new medication, one that has made a tremendous difference in his mood and behavior. As she explains, “I had almost given up when we found the right drug. I know it might not last forever, but at least we get to have a somewhat normal life for a while.”

Image via Shutterstock.

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  1. by Lemuel Smutnick

    On April 12, 2013 at 1:51 pm

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  2. by Kristi Campbell

    On April 12, 2013 at 7:17 pm

    Wow, I love this. People really don’t understand what others are dealing with and you’re so right that somebody should just offer to help. Glad I found this post. I just last night wrote about how I wish we lived in a land of empathy and wonder…my 3 year old son is on the autism spectrum. Thank you.

  3. by Lori

    On April 13, 2013 at 8:53 pm

    Sounds like my 19yo daughter. Increase in head-butting walls and hitting herself recently. What wonder-drug are you using? My son in college prefers not to come home. He never had a normal life.

  4. by manisha

    On April 15, 2013 at 3:35 am

    i can Understand what yoh are going through as i have a 15 year old son with cerebal palsy.