Autism Unexpected: What It’s Really Like

Several years ago, before I had a child with autism, I read an article in Parents Magazine titled, “What It’s Really Like to Raise a Child with Autism” by David Royko. Finding the article now, I see that it was published in January 2003, four months before Jack, my autistic son, was born.

That article stayed with me for years. It is seven years later and I still vividly remember details from it. It is the story of a single traumatic outing in the life of a father and his autistic son. And to me, not knowing anyone autistic, that was what it was really like to raise a child with autism, and it was terrifying.

I have no doubt that is what it was like for that family at that moment—with some magazine editing thrown in. But I came away from reading that article scared and distressed, and I didn’t even have a child with autism at the time. Autism can be hard. Autism IS hard. But autism can be amazing and wonderful too. One of the things I really want to do here at Autism Unexpectedis give you a snapshot of what it’s like to have a child with autism—as I see it.

Royko’s article, as Parents edited it, was all negatives: the child’s speech is unintelligible, he uses a bottle, he has dramatic tantrums, he’s too big to physically manipulate and he doesn’t listen to what his parents want him to do, he still wears diapers, and so on. Nowhere in the article did it say that the boy was loved, funny, silly, or complicated. All it did was show the hardships. The headline made the claim that the article would tell us what having a child with autism was really like, and then they told us it was all hard.

I object to that. I have written ad nauseum on my personal blog about the difficulties that we have faced as a family with autism, because there are many. But I try very hard to show that there are not just bad times, but good times as well—wonderful times.

Yes, there were those times that Jack tried to eat push pins. But there was also the year he taught himself to read—when he was four. Sure, he’s a runner and we have to keep a close grip on him at all times so he doesn’t get lost, but he’s also a cuddler, meaning we get to snuggle with him as much as we want. Bad and good, scary and easy—just like parenting any child.

I don’t know that you can ever relate one experience and make the claim that “this is the way it is.” It varies wildly from family to family and from day to day. But the culture of fear surrounding even the word “autism” needs to change so that parents facing a diagnosis aren’t terrified. It needs to change so classmates and parents of classmates don’t ostracize kids with special needs. It needs to change so that we can discuss our autistic children without seeing looks of pity.

Raising a child with autism is different for everyone, but it is nowhere near all bad. Just as no one article can show you the entirety of an autistic child, no one child can show you the entirety of autism. As the saying goes in autism parenting circles: If you’ve met one kid with autism…you’ve met one kid with autism. I hope to be able to show you one kid with autism.

Jean blogs at Stimeyland and runs an autism events website for Montgomery County at AutMont. There is a longer, more positive version of the Parents article mentioned here on Royko’s website. Had she read that first, she might have felt differently about the story.