There were many that came before and after Harrison’s diagnosis. Learning my dad was not my biological father; my husband’s diagnosis of rectal cancer; deaths, including my own daughter Sophia who died inside my belly. But my son Harrison’s diagnosis of autism in July 2001 came three months after his father Ed and I divorced and was the old one-two punch that I have learned the most from–all of course in hindsight. I hesitate to even write about these stages or phases of awareness for parents or caregivers of children with special needs, in my particular case, autism, as I have been so put off or even verbally attacked by other parents of children on the spectrum. Yet, if you, parents and caregivers (I’m going to use second person here on out) can be reminded of how to not lose yourself after the “shock,” or any of the other phases, then perhaps this will be of use. 

What I remember now about shock are some of the funny bits, my rage response, and my dips into unconsciousness. And that I ran the hell away from this stage and those floral chairs as fast as possible. 

“Think of it like going to Barstow instead of Disneyland,” replied Dr. Lori Bond, the blond no-nonsense clinical psychologist who was giving us the results of Harrison’s evaluation at Stanford’s Children’s Health Council. She had that Junior League veneer that made me uneasy.  “You are still on vacation, but the destination is just less common and… unique to your family.” 

My ex-husband Ed and I sat in her gaudy floral office chairs. We didn’t respond or look at each other. Actually, I stared at the pictures of the pink-skinned children, boy and girl, framed on Dr. Bond’s desk. I knew right then that she’d never sat in these uncomfortable chairs figuratively or literally. 

A month earlier, we had brought Harrison in and we all underwent a battery of tests, questionnaires and straight up interrogations. Everything from, “Did you eat peanut butter when you were pregnant? Do you have mercury fillings in your teeth? Do you use Roundup in your yard? Have you been exposed to lead paint?” 

“Wait, Did you say, Barstow?” I clarified as I try to put the brakes on what I can tell is going to be an announcement–one she’s made many times. For me, when a shock is unfolding, everything slows down, and my brain focuses on the details. 

“According to the DSM IV, Harrison has autism, but at 19 months of age, his development is a moving target. There’s a scale. Based on our assessment, he’s a 6, just over the threshold from PDD-NOS, into autism,” she explained. 

“Wait. I don’t want a diagnosis or label,” I announced, “I just want to help my son.” 

“I know this is hard,” Dr. Bond interjected, but with this diagnosis there are therapies, ABA therapies conducted in the home. And at 40 hours a week, you may see some improvement. There’s research.” 

“Forty what? He’s 19 months old.” 

“If you want to see some progress, you’ll consider it,” she asserted. 

“Is this covered by insurance? I’ve never heard of this kind of therapy before,” I moved to practical matters, something I could process. 

“Currently, it is not. Here’s a handout of some providers we work with. A program runs about $45,000 a year.” 

Ed had not heard any of this and was slumped in his chair, so I leaned over to take the handout. 

“Mr. Mahler, didn’t you say that you are an attorney,” she asked, implying that $45,000 should be doable for our family. 

Ed was silent and crumpled like he’d been punched in the gut, which he had. 

“Criminal defense,” I responded. “And, we just separated a few months ago.” 

“I see,” she said, as she shuffled through a stack of papers. She didn’t ask what I did for a living. 

 Ed finally raised his head out of his hands and asked with his voice almost a whisper, “So what are we talking about here, like Rain Man?” 

“He shows no signs of being a savant, and no one can predict what kind of gains Harrison will make. But he’ll always be different. autistic,” she said with a certainty that sent a visceral wave of fear across my chest. 

“So, what causes autism or whatever it is you think he has?” I asked, feeling the need to get to the bottom of this. I shifted to the defensive because clearly a mistake had been made. 

“Researchers don’t know. Here at Stanford there’s interest in starting a clinic as we’ve had an increase in the number of cases diagnosed. We do know the old theory that it was caused by uncaring or “refrigerator mothers” is false,” she explained. 

The idea that I could be accused of a lack of love–and this could be used as the source of Harrison’s challenges pissed me off. I felt the urge to clear Dr. Bond’s desk of her smiling children and her cup of tea and knock her out of her chair, ruffling her perfectly coiffed hair. It had been a long time since rage in my body was this palpable. 

Instead, like a vapid mean girl, I pointed out, “You have a run in your nylons.” 

She returned my stare, “I know,” and smiled, waiting. 

“I think it’s me,” Ed added as he pulled off his glasses and wiped his eyes with the sleeve of his starched Polo dress shirt. 

Ed was born with a cleft lip, though not a cleft palate. He had multiple surgeries to restructure it, but since he was a child, he has had a habit of covering his lip with his hand like he’s deep in thought, whenever he’s talking to someone. Like an auto-self conscious reflex. 

Dr. Bond apologized for not having Kleenex, reminded Ed that no one knows what causes autism, and shifted in her chair. With an exhale, she indicated that our time was up, “I will finish up the paperwork so you can get set up with a regional center for support. Why don’t you visit our parent library. We have a small autism section.”

We picked up Harrison from their center and walked to our respective cars. Harrison pulled my hair, arched his back, and started to wail when he saw the carseat.  Ed kissed his forehead, pausing with his eyes closed and then took the list of names of therapists. I could see he was hurting, but I hadn’t connected with the news yet. Like the toast was in the toaster, but it was not plugged in. We had never been good at communicating or processing pain, one of the many reasons we were divorcing, but we were skilled at attacking an emergency, which is where we both jumped. 

“I’ll start calling these therapists and see if someone is available,” he contributed like a dutiful team member. 

“Okay, I’ll contact the regional center on Monday,” I joined.

Taking action when you are thick in a traumatic or shocking experience is a sort of drug and is often the reason you delay your own healing. I couldn’t breathe or reflect or talk to myself gently.

“Drive safe and say hi to your mom,” he offered with his leaky eyes.  

It was the Friday before the Fourth of July weekend, and I’d hoped to visit my Mom and sister for a few days letting Harrison wade at the lake and get some park-time in. But I drove unconsciously for nearly two hours. When I saw the sign for Williams and my windshield covered in mosquito guts, I had to rack my brain to remember exactly where I was going and where I’d been today. The radio was on static as whatever station had been on was lost some time ago.  Dr. Bond’s words flooded in again, “Barstow, not a savant, level 6, $45K, autistic” and in the rear view mirror, I glimpsed Harrison’s wide green eyes starting to close and his head bobbing a few times before his chin settled on his drool-soaked guitar shirt. 

Were there signs before the diagnosis? 

Yes. There were many, but none of these nagging concerns prepare you for the shock moment, where your body, mind, and emotions seem to repel each other in their inability to integrate or process the myriad of changes to come. 

What I do know, is that the shock timeline is different for everyone–and trying to find or receive support for yourself during that time is the hardest and most anti-intuitive thing to do. Instead of dealing with my own state of disarray, I was catapulted into a new stage without any processing or healing. 

 I vividly remember a few weeks after Harrison’s diagnosis, watching a video and reading an article about an Indian boy named Tito and his mother Soma, who had devoted her life to helping Tito use a notepad or computer to type out responses. His physical movements  were similar to Harrison’s, but just more noticeable in someone who was 13 rather than a toddler. He had been understanding language all along, but was as they called it at the time, “trapped” in a body that he couldn’t control. 

The idea that I could help Harrison somehow shed his autism to uncover his real self became my framework, a very dangerous one that ultimately hurt us both.