From a Mom Figuring Out a New Autism Diagnosis


Riggin.

We named our kid after a fictional high school football star (“Friday Night Lights,” anyone?) and our favorite former Washington Redskin. Everyone said our kid would be a badass based on his name alone, before they even met him. His twin brother would be the studious one, and Riggin would be the athlete. He’d be strong, a lady’s man and would stick up for his brother when the big kids called him a nerd.

Riggin was born eight weeks premature. We knew he’d have to play catchup and that things like his first laugh and first words would be delayed. At his 2-year checkup, I remember asking our pediatrician if he was on track with his speech; he only had a few words at that time and wasn’t making sentences. We’d ask him things and wouldn’t get a response. He’d throw monster fits over small things because he couldn’t communicate. Sometimes he’d line his toy cars up in a row, but couldn’t explain why. When he got really excited, he’d flap his hands around. The pediatrician assured me Riggin was fine; his speech would continue to develop, don’t sweat it. I wanted so, so badly to believe the doctor. All kids pitch fits, right? And get easily distracted from answering questions? He was probably flapping his hands because he didn’t have the words to express how excited he was to eat my cabbage rolls.  And, what’s the big deal about lining up cars? Maybe he was pretending they were at a McDonald’s drive-thu.

But that little voice kept asking me, What if there’s something wrong? So we got him tested for developmental delays. He was definitely speech delayed and would need speech/language therapy. But aside from his language, Riggin was a smart, averagely developed kid. He could sort objects like no one’s business and throw a ball better than Tony Romo (reminder: we’re Skins fans).

We knew, though, that hand flapping and lining up objects is a sign of autism spectrum disorder, so we also had him tested for ASD. At this point, Riggin was nearly 3 years old, and his personality was taking shape. He loved trains, superheroes and dogs (in that order). He had a huge imagination. He was friendly, sociable with new people and loved giving hugs. He did silly things just to make me laugh, and a few times when I didn’t feel like laughing, he’d put his hand on my cheek and ask, “You OK, Mama?” We were expecting the autism team to tell us to take a hike and quit worrying about our kid. Kids with autism aren’t imaginative, right? They don’t understand emotions or make jokes, and they really don’t like new people, right? But, we were wrong apparently, because they told us Riggin has high-functioning autism. They told us he flaps his hands because it feels good. They said he doesn’t answer questions or interact in conversation because he doesn’t know how. They said he throws fits over small things because to him they are huge things that seem impossible to get over.

The diagnosis was only two months ago, and I’m still very much coming to grips with what it means. My inner snark keeps suggesting maybe the doctors are whack-jobs who think everyone is on the spectrum. Maybe Riggin is just barely on the spectrum; maybe it barely even counts. I’ve a hard time thinking about the alternative, because that means he’ll have this disorder for the rest of his life. I’m so scared of what that means and how it’ll change my dreams for him. Will he be the “weird kid” who does weird stuff like flap his hands and mumble? Will sports be a no-go? What about dating? Can autistic kids date?

Then I realize my dreams for him need to change, because it doesn’t matter what “autistic” kids do — they aren’t Riggin, and Riggin can do anything. He can play sports, be an honor student, paint masterpieces and date a different girl (or boy, whatever, it’s his call) every week if he wants to. I shouldn’t be scared for his future, because it will be bright and amazing and uniquely his, no matter what challenges autism throws at him.

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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