Kim Stagliano, Author of 'All I Can Handle: I'm No Mother Teresa,' on Raising 3 Kids With Autism
Her eldest, Mia, is nearly 16; Gianna is 14 and Bella is 10. The managing editor of the website Age of Autism and a vocal advocate in the autism community, Stagliano's newest book, a memoir that she jokingly refers to as her "Kimoir," is called All I Can Handle: I'm No Mother Teresa. ParentDish spoke with Stagliano about her new book. An edited version of the conversation follows.
ParentDish: There are a lot of people who are going to read your book who don't have children with autism. What do you hope they'll get out of it?
Kim Stagliano: That's really who I want to reach. We're really pretty isolated. We don't really fit into the traditional "special needs" model.
PD: Why is that?
KS: First, this epidemic is new. Autism is 25 years old with these numbers [an average of one in 110 U.S. children have autism.] It existed, but it was nothing like what it is today. For instance, a child with Down syndrome smiles, typically speaks, is typically extremely social -- maybe even more social than the average child -- and that invites an embrace, whereas with autism, you have behaviors. And kids with autism can have the appearance of being prickly because they might not like to be touched. They might not want you to look at them. They might not be able to converse with you. You see Down syndrome and you know you have a set of expectations and you relax. You see my girls, they look perfectly typical; Mia will be 16 next week, and then suddenly you'll see her pop her thumb into her mouth. And your first reaction will be, 'Huh!?!' So the initial engagement sometimes is awkward.
[Second], we don't get insurance coverage. We're not considered medical; we're considered psychiatric. We're trying hard to change that.
PD: So none of the therapies you get are covered?
KS: They are not covered, no. I saw an ad on Monster.com: $50,000 [is what] a family in Concord, Massachusetts will pay for private ABA [Applied Behavior Analysis]. There are insurance mandates being passed in various states around the country, but they're really weak. They cover only some of the straight behavioral therapy. The loophole is so large you can drive a Mack truck through it. Autism is expensive. So you get the financial stress on top of the familial stress, which is why some people crack.
This is serious business, autism. And we're normalizing it. And that's a real concern for me. When we hear about something so often, it starts to become routine. And what goes on behind closed doors is nothing normal. And yet we're starting to feel like, "Oh, autism, that's being really smart, isn't it? I thought autism meant being really good at getting swishes on the basketball court." Uh, no.
KS: Mia got her period at 9, uh, hello? ... Twenty percent of fifth grade girls have their periods. That's the recent stat. When I was a kid it was like 8th grade. Mia wasn't potty trained at 9, so, gallows humor, [my husband] Mark and I would joke that "Oh great, we'll be changing period pads and wiping poop at the same time." And then when it happened, it wasn't so funny.
PD: You mention in the book that you believe things happen in threes; you have three daughters. I'm wondering if this is the first book in a Kimoir trilogy?
KS: Wow. A trilogy! How many crapisodes must I go through to write another book?
PD: But surely you have so much more to say?
KS: I do have more to say. But I'm actually writing a young adult [novel] right now; the main character does not have autism, but her brother does. It's going to be about the aging-out process and the responsibility that she fears and doesn't want to face because she knows what's coming down the pike for her when her parents are old. She knows she's going to have the responsibility for her older brother and she doesn't want it.
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