Grandparenting A Child With An Autism Spectrum Diagnosis
BY MARIE F. CAHALANE, M.ED.
Grandparenting is joyful and difficult work. As a grandmother, I walk on an imaginary tightrope, maintaining a precarious balance between being a font of wisdom, experience, and advice while teetering on the edge of overstepping, meddling, and being annoying. When my daughter, Lisa, was a new mother, she tapped into my experience with breastfeeding, diaper rash, and cradle cap. She was less interested in my opinions on solid foods and sleep routines. I watched for cues and volunteered advice when welcomed and bit my tongue when it wasn’t. Now having navigated the role of ‘sometimes savant’ for over a decade, I feel more confident about opening my mouth without pushback. Even so, I get myself into trouble. In my imagination, the learning curve in my education as a mom and a Mami resembles a toddler’s scribble with a wild, erratic trajectory.
Opportunities to overstep in my daughter’s life are abundant since we live next door to Lisa and her family. The arrangement challenges me to understand my place every day. Our enmeshment runs deep, far beyond someone appearing at my backdoor to borrow an egg or a cup of milk. As grandparents, the closeness demands our help in simple disasters like a skinned knee and for bigger ones like needing a stitch. We share the stress of raising kids. As frenetic as it can be, being a part of the daily lives of our grandchildren is priceless.
I experienced the joyfulness of grandparenthood early on. My granddaughter, Molly, now eleven years old, presented with strong verbal skills at an early age. By the time she was nine months, Molly moved beyond Mama and Dada to calling everyone by a self-styled name–Amami for Mami, Papa for her grandfather, and Scoot for Uncle Scott. She dubbed our dogs Bailey and Muffy, Bay and May. Every time our little genius spoke, our hearts burst with pride. Beautiful and brilliant–she was everything our family hoped for and expected.
We hardly noticed when, a month after turning one, Molly lost her words, but, in time, she met my prompt to “Say ‘Mami!’” with a blank, soulful stare. May and Bay walked past her highchair without verbal acknowledgment. Smiles became as rare as her words. Increasingly, Molly displayed a detached interest in the world around her. Her developmental progress, which seemed on track, had suddenly derailed. When I pieced the behaviors together, the career school counselor in me awakened. I knew the signs but, suddenly, the ability to label the constellation of symptoms with the words I used as a professional terrified me.
I could have kept quiet but what I had observed raised my suspicions. Molly’s well-being was too important to hold back and I allowed instinct to intervene. On the day I hinted at my suspicions, the reaction I received from Lisa, a preschool educator, didn’t surprise me.
I said, “Have you noticed any changes in Molly? She’s not using words as much.”
“What are you saying, Mom? You think she has autism?” Lisa’s tone accused me of thinking the unthinkable. I sensed she recognized signs but now I had spoken the words that made the possibility more of a reality. I knew my kid. Lisa heard me and reluctantly listened to the voice inside her head as well.
“I needed to be present and mute, much like my silent grandchild.”
I cushioned the rest of the conversation with grandmotherly statements like “I just couldn’t stand by and say nothing,” and professional statements such as “Early intervention in situations like this can be very effective.” I wanted to sound hopeful like Molly could be fixed somehow. Yet, my unease consumed me as I stood at the threshold of acceptance. I thought about my own students on the spectrum. Would my granddaughter also struggle with self-awareness and social situations? I was getting ahead of myself. I suppressed my own fears. The gentle work of helping Lisa accept her new reality had begun. I knew instinctively to stand back and be ready when she sought my input. I needed to be present and mute, much like my silent grandchild.
Lisa wasted no time mobilizing her team. With her pediatrician on board, clinical psychologists from Beacon Services swooped in. The testing revealed that Molly’s abilities fell within the tenth percentile for both expressive and receptive language. Within weeks, an intensive and focused treatment plan was put in place. After two years of in-home early intervention therapies, social groups, and an integrated preschool experience, Molly began to use words again. The tension in my chest slowly lifted and I breathed a bit easier for the first time in ages. I also sensed an unspoken relief in Lisa.
Lisa seldom discussed Molly’s challenges; speaking of the likelihood of autism made it too real. Instead, she busied herself with working the therapies she had been taught. However, I admit our family ignored some of the other signs: Molly’s sensitivity to sound; her ability to play alone for hours, even while surrounded by other kids; the way she engaged in repetitive behaviors, like stacking and lining up toys methodically; her sing-songy speech patterns. Validating those details only muddied the progress we all had witnessed. It was clear Molly was intelligent. Maybe the initial diagnosis was incorrect. Maybe she had overcome her deficits.
Yet, at three, testing confirmed the presumptive medical diagnosis: Pervasive Developmental Disorder NOS (not otherwise specified). Molly was on “the spectrum.”
The testing predicted that interpersonal skills would not come naturally for Molly. To address that concern, she has participated in weekly social groups and therapies. Early on, she adopted scripted greetings and introductions like “Hello, my name is Molly. What’s yours?” that appeared cute to the cashier at the Stop and Shop checkout. Yet, her practiced speech pattern resembled that of an automaton. Some of these techniques have lingered making Molly one of the most mannerly children I know, however stilted and manufactured her language sounds.
“I trusted them to know the best time to tell her about her disability.”
Over the years, Molly has thrived and she hasn’t. To the untrained adult observer, her diagnosis defies detection. Molly holds her own in grown-up conversations. Intellectually and academically, she operates at an extremely high level, with a natural curiosity and tenacity that often tips into obsession. A voracious reader, she often prefers the companionship of a book to a peer, especially now, at eleven, when social interactions sometimes trip her up. Molly’s lack of self-awareness in social settings is obvious; she talks about her latest interests like famous women scientists and characters from books, instead of Roblox and boys. Often, her pre-teen peers can’t see beyond her different way of thinking and exclude her from parties and activities because she is different. Molly suppresses her hurt, and we question how much she understands people who are unkind.
Occasionally, I am privy to glimpses of how deeply Molly internalizes the unkind things people do. I am her sounding board as she animatedly unloads her anxiety and hurt in a flood of anecdotes and interpretations. As I sit and listen, I can’t help feeling sad.
In the past, I often questioned if Molly would be better served knowing her diagnosis, but I withheld my opinion. Her parents discussed the topic of when was the right time to tell Molly about her uniquely wired brain. I trusted them to know the best time to tell her about her disability.
This past spring, Molly’s parents decided the time was now to tell her that she is ‘on the spectrum.’ Again, I deferred to her extremely aware and well-informed parents. Now on the cusp of middle school, Molly’s challenges are more obvious. Lisa observes her daughter’s orbit, a satellite always on the periphery of the cluster of girls wandering around at the park or the schoolyard. Lisa’s heart breaks when she witnesses Molly being excluded from her peer group. Lisa often asked herself, would knowing her truth help her develop social skills, or would it cripple her? She also knew Molly. Once enlightened, our bright kid would research what it meant to be diagnosed with Autism spectrum disorder. We struggled with the pros and cons, but ultimately, her parents made the decision about ‘when’ becoming ‘now.’
When Molly learned the rest of her story from her parents, the knowledge filled a gap, providing her the insight she needed to understand herself better. When I asked my daughter how Molly took the news, Lisa said, “She asked, ‘Why didn’t you tell me before?’” I heard in my daughter’s voice a tinge of regret. Had she waited too long? When is the right time?
After the big reveal, Molly cried but she regrouped quickly. When her eight-year-old brother sauntered into the room a few minutes later, oblivious to the world-altering conversation he had missed, Molly announced, “Declan, I’m autistic!” Declan scrunched up his face and said, “What’s that?”
Molly eloquently shared the information that her parents told her, a story that was now hers. Declan struggled to understand. As he walked away, he shrugged. Molly was still his quirky sister, no different than an hour before, with or without a formal label.
A while later, my granddaughter poked her head inside my back door and I could see that she had been crying. She announced her news. “Mami, I’m autistic. Like Temple Grandin.”
Molly had read about Temple Grandin in the book, Goodnight Stories for Rebel Girls: 100 Tales of Extraordinary Women, and had shared Temple’s story with me a year earlier. While Molly connected Temple with the word ‘autism,’ she now needed to understand herself in the same context. We sat down at the kitchen table and talked about what it meant to be ‘on the spectrum.’ True to her way of processing information, she worked it out by asking questions and applying what she had already learned. She reflected on her own social issues, talking about friends who were nice, those to whom she should gravitate, and what she could do to be a friend. She instinctively knew her peers with whom her heart was safe, and the ones who were less kind. She lingered for an hour, talking animatedly in an attempt to mask her fears. I know her too well to be fooled. Her anxiety floated just below the surface of her sea of words.
Later that day, Molly visited again, this time to share a list of famous people on the spectrum. She rattled off the names: Emily Dickenson, Lewis Carroll, Hans Christian Anderson, Albert Einstein, Charles Darwin. As I expected, she had done her research. While she knew she was in good company, Molly now seemed more pensive. As the idea of being on the spectrum took hold, I heard a quiver in her voice, an outward sign of her trepidation about the future. It’s the same fear her family has harbored all of these years, ever since the day Molly’s behaviors had a name.
When Molly returned from the library this week, she ran to tell me about the books she had borrowed. Each title focused on kids with disabilities. Her curiosity about shared experiences intrigues me. She craves information about navigating the world as an ASD kid. I know she has questions. I admire her drive to seek answers without scouring the internet. I would expect nothing else from our bright, inquisitive, and curious girl.
“Last week, she attended her first sleepover, a huge rite of passage for most kids; for Molly, it was a major accomplishment.”
Lisa had always shielded her daughter by observing and intervening in interactions, by facilitating playdates, and by being available to listen when peers snubbed her. Now that Molly is older, opportunities for her mother to play referee and intermediary are less available. As her grandmother, I worry about my granddaughter’s emotional well-being as she becomes increasingly aware of herself and others. In light of her budding independence, empowering Molly to develop critical interpersonal skills based on her uniqueness arms her with insight to navigate times when relationships get dicey. She is slowly finding ‘her people,’ that crowd of quirky, silly, put-themselves-out-there kids, in her class. Last week, she attended her first sleepover, a huge rite of passage for most kids; for Molly, it was a major accomplishment.
I watch from the sidelines with pride as our curious little girl plays piano, takes voice lessons, writes and acts in plays, and Irish step dances. Molly has goals: to act in musical theater, to write a young adult novel, and to be a veterinary aide. She is compassionate, empathic, and astute, qualities that set her apart from her ‘tween peers. Most importantly, she is fearless. And while skillful friendship may not come as naturally as her other talents, I know that anyone willing to accept Molly’s quirkiness and honesty as a part of who she is will reap a loyal, trustworthy, and caring friend. In a way, her diagnosis explains her to others and to herself.
I also know I will never stop worrying about Molly, even though I know she will be just fine. That information this grandmother will keep to herself.
ABOUT THE AUTHOR
Marie F. Cahalane, a lifelong Bostonian, is a writer, an educator, an entrepreneur, and most importantly, her grandchildren’s Mami. Her blog, mamiknowseverything.com, is her passion and her essays have been published in HerStry, Medium, and Passager Books Pandemic Diaries. She is currently pursuing an MFA in Creative Nonfiction and dedicates her free time to her work-in-progress, a memoir of her challenging relationship with her father, a serial hoarder.