We need to include children with autism in the real world. Here’s what everyone can do to help
Helping children with autism make small steps toward overcoming hurdles in public life requires shifting some of the burden, says Whitney Ellenby, a mom to a son with autism. That means parents need to educate others by disclosing a child’s disability, and bystanders need to offer tolerance. Whitney Ellenby shares her humble opinion on how we can all help.
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JUDY WOODRUFF: According to the Centers for Disease Control, one in 68 children have autism spectrum disorder. It’s a diagnosis that can affect a person’s social, communication and motor skills. It is diagnosed four times more often in boys than girls. Whitney Ellenby has a son with autism. And, tonight, she shares her Humble Opinion on just who should be helping him.
Imagine a scene. A 5-year-old boy holding his mom’s hand heads into a packed auditorium to see an Elmo show. Suddenly and without warning, he breaks into a full-body tantrum.He starts shrieking at high pitch, pounds his head with both fists, and rams his skull into the floor. Everyone is watching, horrified and afraid. This kid obviously doesn’t want to go into that show. And just as they expect them to leave, his mother leaps on top of him full force, pins him to the ground and drags him inch by inch towards the show, obviously against his will. This child, my child, has autism and an intense fear of unfamiliar places. But he can make it into that show, and when he does, he will have made a small step to changing the course of his life. But it will require what I call burden-shifting.
The burden begins with me, the parent of the autistic child, to disclose his disability. My child has autism. I’m working with him to overcome his fears. That’s it. That’s all I owe you. And notice that I am not apologizing for his autism, simply identifying it. Many parents of autistic children will resist this idea: Why should I have to explain anything? My life is already hard enough. Because a tantrum is an opportunity to educate. I believe we advocate best for our children when we put their autistic behaviors in context, rather than let others assume the worst. We advocate best if our words are not angry or defensive, just factual. “My child has autism. I’m doing the best I can.”
But now the burden shifts to you, general public, all you bystanders who don’t know what to do when you witness the unthinkable. And the answer is tolerance. You have a duty not to comment cruelly, not to insist we leave. A duty to temporarily tolerate the screaming, even if it makes you uncomfortable. Because if you’re uncomfortable for 20 minutes, imagine how it feels for the parent who lives with it.
Given our numbers, public tantrums should be happening daily, hourly. But they are not, because we parents feel so ashamed of tantrums, we keep our children locked up at home. In my humble opinion, this has to stop, because there is no substitute for real world exposure. And a child with autism who is kept at home cannot engage with the world. And if he can’t engage, he can’t practice overcoming his fears to participate.
So, if we want people with autism to become productive and contributing members of society, it must start here. If we want true inclusion, we’re all going to have to be uncomfortable for a little while, as we all accept our burden.