Mom Reveals The Clue That Led To Son's Delayed Autism Diagnosis — 'Feels Like Immense Relief'
Everything suddenly made sense.
Ben Warren | Unsplash This past fall, my son’s therapist asked me to attend their next session so that Holden could “tell me something.” I immediately assumed that Holden was going to announce he was gay or transgender. I couldn’t think of anything else that would prompt a sixteen-year-old to have his mother join him at therapy for a big reveal while being un-urgent enough to warrant a weeklong wait until his next appointment.
I tried not to dwell on all the possibilities and instead focused on the love and acceptance that I would shower Holden with upon his announcement. I hoped his revelation would finally bring him peace and pave the way for better days ahead. The previous eight months had been hell for Holden, and they weren’t much better for me or my husband, Jack.
There was something significant going on with Holden. There always had been, right from the start.
Our favorite baby picture of Holden was taken when he was only two weeks old, propped up on the couch in a blue felt blanket. His surprisingly thick blonde hair is standing straight up. His eyes are focused on something to his left, his expression serious, as if he were already contemplating the mysteries of the universe.
Holden behaved as if he were rather unhappy to be born to twenty-five-year-old first-time parents. While Jack and I were madly in love, we were rife with inexperience, and Holden certainly made his dissatisfaction known. From the day of his birth, he refused to sleep in the way that medical professionals and sleep sacks prescribed. Back was not best for Holden; laying him down flat on his back in a crib or bassinet prompted immediate screaming from him.
As a baby, the only way to get Holden to fall asleep was to overload his senses.
We’d put him in his swing with the sound machine or Corinne Bailey Rae’s music blasting.
We’d walk him in the stroller or carry him in the Baby Bjorn or rock him for hours. Eventually, we eschewed all medical advice; not sleeping at all seemed far more dangerous than co-sleeping. Holden slept with either me or Jack for naps, laying so often in the crook of my right arm that I ended up with a pinched nerve.
As a toddler, Holden’s interests became his obsessions. It started with Thomas the Tank Engine. From ages one to about four, you could usually find Holden whispering a story alongside a line of trains linked together by their magnets, a wooden track winding itself around the entirety of whatever floor he’d chosen to build on that day. He would play like this for hours on end.
When Holden was in preschool, Jack introduced him to an old Nintendo. Thomas was soon replaced by Mario — Mario toys, apparel, bedroom decorations, Halloween costumes, figurines, books, you name it. It was cute how he could tell you about every console and put together every gaming system, but Holden took his games too seriously, often becoming frustrated by something in the virtual world. Holden would grow even more frustrated with me and Jack when we asked him to join us in the real world.
As a toddler, he would refuse to end the game, and if we did it for him? Meltdown.
He’d rage at us, unrelenting, unable to “let it go.”
Just when we thought he’d moved on to something else, we’d discover that “something else” was something downright dangerous, like throwing pillows out of his second-floor window and then jumping down onto them. Dangerous antics aside, it didn’t seem like Holden had a death wish. His gaming was what kept his mind occupied from the thoughts of death that hindered both his waking hours and his sleep — and provoked his extreme anxiety.
Holden was about four years old when he started obsessing about the afterlife, and I had to marvel at how much we had in common. I too had been a small child when I realized that life was finite, flaring up my own death anxiety for the first time. It scared me then, and it still does now. Sometimes my anxiety leads to mania, other times to depression, but in recent years it’s calmed to a lingering whisper that alternatingly haunts me and encourages me to live in the present. As much as I hated my fear, it felt worse when my child felt it. Holden would creep downstairs or into my bedroom hours after I’d tucked him goodnight.
“I’m afraid of dying again,” he would whisper in his little voice, and I felt absolutely helpless. I struggled with mitigating these terrors as an adult — so what could I say to a four-year-old?
It seemed like my replies were never good enough, because Holden’s fear never left.
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The difference between Holden and I is that when I was a kid and freaked out about death, I tried so very hard to be good — as if that would secure my admittance into Heaven. Holden, however, didn’t seem to get that memo.
Our life with Holden would be punctuated with phone calls from teachers about disrespectful or inappropriate behavior.
Even in preschool and kindergarten, his teachers complained that he wouldn’t sit still on the carpet during story time or he would blurt out the (correct) answer before anyone else had a chance to respond. We tried to reason with Holden, but his rebuttal seemed legit. “It hurts my balls to sit crisscross applesauce,” he told Jack. “Why can’t I just sit in a chair?”
Holden didn’t seem to understand that he wasn’t allowed to be different. When you’re a little kid, you just don’t care about institutional norms.
His first-grade teacher pushed us to have him evaluated for ADHD, noting his impulsiveness and inability to focus. Holden’s pediatrician had Jack, myself, and his teacher fill out a survey and then promptly wrote us a prescription. It all felt so fast, and I endlessly questioned why I was putting my little boy on drugs for acting like…well, a little boy. He wasn’t hurting anyone, was he?
I relented because I worried about his future. He’d need to learn to “do” school. After all, Holden wasn’t even reading at grade level yet. “The books are boring,” he told me with a shrug, so I gave him Minecraft guidebooks well above his reading level. He immediately took to sounding out the words. “Obb-sih-DIE-an,” I’d hear him whisper in the living room. “Obsidian,” I’d correct from the kitchen. And like that, Holden learned to read.
Maybe the medication helped Holden focus. His teachers seemed to think so, but as the meds wore off in the afternoon, Holden would spiral into an anxious fit. Getting him to eat dinner with our family was a chore in itself, and Lord help us if that coincided with him turning off his game. Bedtimes weren’t any better, especially now that Holden had three younger sisters who also needed putting to bed.
Jack and I felt like we were failing as parents, and we vowed to be better.
Maybe we needed to be more disciplined, more tough love, more structured, more intentional about our routines.
We made chore charts and schedules with checklists, but nothing helped. Our house felt like it was in a state of constant chaos.
Through it all, Holden’s teachers kept complaining. They all admitted that he was smart and likable, but he wouldn’t do the work. They said he was “challenging authority” in second grade, adding that when he lay on the floor chatting to himself he was “distracting other students” and being “disrespectful.” Everyone complained that he didn’t follow the rules.
His fourth-grade teacher said she was “concerned about his ability to self-regulate” and noted that he didn’t seem to be “internalizing” their conversations. She said he often seems “flustered, and like he wants to say something but can’t find the words.” By fifth grade, he was in trouble for “ongoing silliness.” These quotes are from emails I saved. Reading them now feels like a dagger to my gut. I should have known. I should have realized. It was right in front of me the entire time.
In fifth grade, we sought out better professional help. We had Holden thoroughly evaluated by a psychiatrist who confirmed his ADHD and anxiety. She prescribed anti-anxiety meds to help with his afternoon “comedown” and to help him sleep at night. She also prescribed therapy, and Holden started working with Krista, who would become a blessing for our entire family.
With Krista, we worked mostly to quell Holden’s obtrusive thoughts about death. A philosophy book had recently backfired — “The book says that some people believe we exist for eternity when we die,” Holden told me in a panic one night. “But other people believe there’s nothing. I started thinking about both and I don’t like either and it’s freaking me out.” Holden was too smart and too deep for his own good.
I hoped that middle school would be a welcome relief for him, but Holden has always resisted rules he didn’t understand.
And it seemed that his new school had so many more of these. When a visitor to class passed out sunglasses to all the students, Holden got in trouble for refusing to remove them later in the day. There was no rule about sunglasses, and they’d given him the sunglasses, so why did he have to take them off? He continually hit walls like this.
Then the pandemic hit, sending not only Holden but the whole world into a state of anxiety and panic. Holden took out his mania by climbing dangerously high things, including fifty-foot trees in our backyard and three-story decking on the side of a house we’d rented in the Smoky Mountains. We enrolled him in a rock climbing class, but after a few years, the novelty wore off. We spent a good portion of the pandemic adjusting Holden’s medications, and trying out new ADHD meds while also adding antidepressants and bipolar medication into the mix. He was on quite the cocktail by the time the lockdowns lifted.
When life started to return to normal, Holden seemed better for a while. He joined the marching band at the end of eighth grade, and the fall of ninth grade was filled with band competitions and then driver’s training. Holden seemed to have finally found a “group” at school, and Jack and I were beyond excited for him.
We even started to wean Holden off the antidepressants. But we got too far ahead of ourselves.
Holden hit rock bottom during the winter and spring of his freshman year. Suddenly he had no desire to meet up with friends.
He said that driving made him too anxious. He wouldn’t do anything besides watch YouTube videos on his phone, play video games, or sleep.
If I asked him how he slept the night before, he’d say something like “Not great. I had thoughts about dying again.” All we ever saw Holden doing was using technology or sleeping, so we wondered, was it a technology addiction? I spent hours researching and conferencing with his psychiatrist. Holden seemed to fit the mold, but it also felt like one of those chicken-and-egg situations. Was the technology causing depression, or was depression causing technology?
Holden agreed that he checked all the boxes for technology addiction, but he still didn’t want us to limit his time on screens. When we attempted to do so, he would have a raging panic attack. His psychiatrist suggested that he might need to go to a residential depression facility, but his therapist advised against it. “He won’t get better there,” Krista said. “They aren’t nice places. He needs to be with you.”
Holden kicked off the summer following freshman year by sleeping through his final exams.
Then he proceeded to isolate himself for the rest of summer break in his bedroom, even refusing to join us for dinner or our Friday family movie night.
When I took away his gaming console in an attempt to get him to get out of bed, shower, eat, and function, Holden flew into yet another rage and then threatened to kill himself. Jack was gone from work, and I freaked out in desperation. I called 911 and had police sent to the house to help me calm Holden down. I declined to have him admitted to the hospital. Jack would be home soon enough, and it seemed that having the police officers at our house made Holden realize the severity of the situation. He told me that he wasn’t going to hurt himself; he was just mad. It was obvious that Holden was depressed, even though he was adamant that he wasn’t.
We put him back on antidepressants. Two, one for dopamine and one for serotonin. At his therapist’s suggestion, we backed off the screen time restrictions and just let Holden be.
Things seemed better at the start of Holden’s sophomore year that fall. He spent a lot of time outside, walking home from school and practicing with the marching band. He walked the dogs whenever we asked him to. He was late to school most days, but he excelled in AP Computer Science.
Still, he floundered in his core subjects. He never did homework and was distracted and unfocused during class. He went to all the band parties after competitions, but he didn’t seem to have any close friends.
He continued to isolate himself in his bedroom; even our daughters’ friends commented that Holden was like a ghost in our house.
So when Holden told me that he had something to tell me in therapy, I wondered if it was some struggle with his sexuality that made him so withdrawn from the world. After all, that had been my issue — I’d been suppressing my feelings for women for my entire life up until just a few years ago, and acknowledging those feelings felt like a dam breaking inside me. Maybe Holden would have a similar announcement.
Instead, sitting perpendicular to me on his therapist’s L-shaped couch, Holden said something else.
“Yeah, so, I think I’m ASD,” he said, his eyes not quite meeting mine.
Holden is prone to staring at my forehead or an object just over my shoulder, but he doesn’t often look me in the eye. I suppose I should have taken that as a clue, but I too often avoid eye contact. It feels so intense, doesn’t it? I always gave Holden a pass for that.
Jack and I had long called Holden “quirky,” a little computer genius who would rather be on screens than with actual people. We assumed that his hyper-focus was a result of his ADHD, not anything more serious. Still, I wasn’t exactly surprised by Holden’s admission, but I was surprised that this was the first I had heard about it. He’d been evaluated a few times now, and ADHD was always the diagnosis.
Holden went on. “I’ve been talking with Krista, and I took these online quizzes, and yeah…I just feel like that’s who I am,” he said.
I found myself focusing on Krista’s wall art as I thought about my response. I was disappointed in myself for not seeing this sooner, but I didn’t think of Holden any differently.
I felt a sense of relief that he’d figured out what I hadn’t been able to, and I realized with pride that I’d raised a child who was now able and willing to reflect on his own identity.
Krista prompted me to share my thoughts, which isn’t as easy for me to do vocally as it is through my written words. “I feel good,” I said, “that now I can help you with this. Like, we can figure out life hacks or whatever to make things better for you.”
Holden scrunched up his face. “I don’t think you know what a life hack is,” he said and started to explain.
Krista cut him off. “Mom is just trying to say that she’s going to be able to support you better now,” she said. She was right about that.
In the six months since Holden’s revelation, we’ve made progress.
He was evaluated by the school psychologist later this past winter and qualified for extra support for Autism Spectrum Disorder. He now has a team of staff members who care for him at school and his performance has never been better.
Holden still spends a lot of time isolated at home, but I understand it now.
I hear him chatting online with others who are also obsessed with glitch hunting in Super Mario Odyssey, and I realize that he has a very niche tribe that’s hard for him to replicate in the real world. But he does perk up for a family outing and is looking forward to our next family vacation, and he always makes time for our dogs.
Holden isn’t gay, but he also admitted to us last fall that he identifies as non-binary. Turns out there’s a high correlation between neurodiversity and being gender diverse and/or queer. It’s one of the many things I’ve learned in the past few months, along with how very hereditary autism is.
In fact, I’ve gathered quite a strong case for my own diagnosis, but that’s another story.
In regards to Holden’s autism, it mostly feels like an immense relief.
I don’t like to dwell on how many of us missed this diagnosis over the years — doctors, psychiatrists, therapists, Jack, me. I don’t like to dwell on all the things I did so very wrong in terms of raising and disciplining a child with ASD. Instead, I am focusing on the beauty of understanding that now encapsulates my relationship with my son. I am looking forward to seeing how he utilizes his unique strengths, and I feel better equipped than ever to support him on his journey.
My son is a deep soul, intent on uncovering his identity and making sense of the world through his unique perspective.
I see a light in his eyes that wasn’t there before, sparked by self-awareness and self-acceptance.
I also know that Holden is aware that I love him, and now, he seems pretty pleased that I “get” him, too.
Anna Eliza Rose is a writer, librarian, and mom of four. She frequently posts her personal essays to Medium and Substack and is currently working on a follow-up to her memoir