My Autism Story: Amy's Son Is on the Spectrum

Jeanne Sager
Big Kid
6


Photo from Amy Lutz
Amy Lutz lives in a shared household in Villanova, Pennsylvania, with her husband, their five children (ages 11, 9, 7, and 3 1/2-year-old twins), her sister, her brother-in-law, and their three children (ages 5, 4, and 22 months). 

She and her sister blog about their communal living experience at Who Else Wants to Live in My House

She shared the story of her son Jonah's autism with The Stir in honor of Autism Awareness Month.

How old was your son when you first suspected he might have autism? What were those initial signs?

Jonah is our oldest child, so we didn’t know much about autism when he was a baby. He seemed perfect to us -- he was the first in his playgroup to crawl, then walk; he was always happy, flirting with strangers from his stroller or his perch in the shopping cart. When he started crawling across our pool table to line up the pool balls in numerical order -- clearly a symptom of his autism -- we just assumed he was a genius. 

It was only when he wasn’t talking by his two-year checkup and a hearing test ruled out deafness as a cause that our pediatrician suggested we get Jonah evaluated by our county’s Early Intervention Team. 

In retrospect, of course, there were other signs. One day, when Jonah was about 15 months old, we had friends over who have a son the same age -- in fact, we met in childbirth class. At one point, one of our friends asked his son to go get his shoes -- and off the boy toddled to retrieve them. I remember thinking, Wow, I wonder when Jonah will be able to do that?

Today, an inability to follow simple directions, the lack of a true index finger point, and a failure to respond when a child’s name is called are all considered red flags for autism, but in 2000, none of these were mentioned in any of our baby books.

In those first moments when you found out his diagnosis, how did you react? And how did that reaction change over time? 

Although the Early Intervention Team approved Jonah for services shortly after his second birthday, he wasn’t officially diagnosed until he was over 2 1/2 -- we had to wait that long for an appointment with a developmental pediatrician. 

Looking back, I’m glad we had those eight months to read and research and compare Jonah to his typically developing peers. By the time his formal assessment finally rolled around, my husband, Andy, and I already knew what the doctors would find. I think it would've come as much more of a blow if we hadn’t mentally prepared ourselves.

The grief of Jonah’s diagnosis softened into acceptance a long time ago. But besides the social and linguistic impairments typical of the disorder, he continues to engage in dangerous behaviors -- including aggression toward himself and others -- and this is something we can never accept. The struggle to find the right combination of medication and behavior strategies necessary to ensure everyone’s safety continues to consume us. 

Like the vast majority of parents of autistic children, for us it isn’t about celebrating Jonah’s quirky traits, so much as it's about somehow providing him with the skills he'll need in order to enjoy even a modicum of independence as an adult -- including impulse control and anger management.

What's his exact diagnosis? And what does that mean in laymen terms?

Jonah has been diagnosed with both autism and rapid-cycling bipolar disorder. He received the bipolar diagnosis after he was admitted to the Neurobehavioral Unit at the Kennedy Krieger Institute, where he spent most of 2008 being treated for his aggressive behaviors. Although we had always suspected that many of Jonah’s tantrums were internally driven and thus beyond his control, it was a relief to finally have a name to attach to Jonah’s sudden bursts of agitation, sorrow, and giddiness -- before the bipolar diagnosis, all we could say about Jonah was that he never held a grudge, because five minutes after trying to pull your hair out, he'd crawl in your lap for a cuddle.

Jonah’s teachers have always told us that if we could just stop his tantrums, there’s no limit to what he might accomplish -- he’s bright, verbal, and highly engaged with his family, his teachers, and other favorite adults. So our recent efforts have focused primarily on stabilizing his mood through medication. Unfortunately, Jonah, like many autistic children, is very slippery to medicate. Over the past five years, he’s been prescribed antipsychotics, antidepressants, anticonvulsants, worse; others had no effect, and some helped for a while, then stopped.     

What are three things you wish someone would've told you about autism that you had to learn on your own?

Honestly, there’s nothing about our journey with autism that I wish someone had told me in the beginning. When Jonah was first diagnosed, Andy and I were so hopeful about his future -- we used to joke about how oblivious Jonah would be to all the gorgeous coeds who would surely pursue him at MIT or Cal Tech, wherever his obsession with Linux or irrational numbers would take him. 

A decade later, our dreams have downsized: A job at Wawa; a real, reciprocal friendship; a group home -- these are the futures we now wish for Jonah. But our early optimism certainly helped propel us through some very difficult times -- including a summer at CHOP’s feeding clinic, where Jonah required force feeding to overcome an extremely limited diet; increasing aggression; new school placements every other year as teachers and administrators realized that Jonah’s behaviors were too much for them to handle.

If someone had handed me a crystal ball when Jonah was 2 and shown me everything we would have had to deal with, I’m sure I never would have been able to handle it.

What or who has been your greatest resource for information during this time?

Our greatest sources for information have been Jonah’s teachers, therapists, and doctors.  

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