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, 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 does not 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 toward 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 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.” 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.” Because we are not seeking to punish the people who might be our greatest allies, if only they understood.
But now the burden shifts to you, general public. All you bystanders who don’t know what to do when you witness the unthinkable. 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. A child with autism cannot engage with the world if he’s kept at home. And if he can’t engage, he can’t overcome his fears and participate. And if we want people with autism to become productive and contributing members of society, it must start here. If we really want inclusion that benefits us all, we must all accept our burden.