Navigating Tonsil and Adenoid Removal for My Child with ASD and ADHD
As a parent, making medical decisions for your child can feel overwhelming. When your child has autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD), the process becomes even more nuanced. This is the story of how our family navigated the decision to remove our 8-year-old’s tonsils and adenoids—a journey filled with uncertainty, preparation, and ultimately, hope.
The Backstory: Chronic Issues and Missed Red Flags
For years, our son struggled with frequent sore throats, snoring, and restless sleep. We initially brushed these off as typical childhood ailments or attributed them to his sensory sensitivities (common in ASD). His pediatrician recommended monitoring, but when his breathing became noticeably labored at night and his daytime focus worsened (a major concern given his ADHD), we sought a second opinion.
A pediatric ENT specialist diagnosed him with enlarged tonsils and adenoids, which were contributing to obstructive sleep apnea (OSA). The doctor explained that untreated OSA could exacerbate ADHD symptoms and affect cognitive development. Suddenly, everything clicked: his fatigue, irritability, and difficulty concentrating weren’t just “part of his diagnoses”—they were interconnected.
The Decision: Weighing Risks and Benefits
Surgery is never an easy choice, especially for a child with sensory sensitivities and communication challenges. We worried about how he’d handle the hospital environment, anesthesia, and recovery. However, the potential benefits—improved sleep, better oxygenation, and reduced inflammation—outweighed our fears. Studies suggest that resolving OSA can positively impact behavior and attention in neurotypical children, and while research on kids with ASD/ADHD is limited, we felt optimistic.
We involved his therapists in the decision-making process. His occupational therapist (OT) created a social story to prepare him for the hospital experience, while his speech therapist worked on communication strategies for expressing pain or discomfort.
Preparing for Surgery: A Sensory-Friendly Approach
Children with ASD often thrive on predictability. To minimize anxiety, we:
– Used visual schedules to outline each step, from pre-op checks to recovery.
– Toured the hospital beforehand, letting him explore the waiting room and see medical tools (e.g., stethoscopes) in a low-pressure setting.
– Packed comfort items: noise-canceling headphones, a weighted blanket, and his favorite fidget toys.
– Collaborated with the medical team to limit wait times and avoid overwhelming sensory stimuli.
The anesthesiologist also adjusted their approach, using clear, concrete language instead of abstract metaphors (“You’ll breathe special air that helps you take a nap” instead of “You’ll drift off to sleep”).
Surgery Day: Unexpected Challenges and Small Wins
Despite our preparation, the morning of surgery was tough. The unfamiliar smells, bright lights, and disrupted routine triggered a meltdown. However, the nurses were incredibly patient, giving him extra time to adjust and allowing me to stay by his side until he was sedated.
The procedure itself took about 45 minutes. The surgeon confirmed his adenoids were significantly enlarged, and his tonsils were chronically infected. Recovery in the post-op room was rocky—he woke up disoriented and in pain—but having his comfort items nearby helped him self-regulate.
Post-Op Recovery: A Marathon, Not a Sprint
The first 72 hours were the hardest. Swallowing was painful, and he resisted taking medication. For a child with ADHD, sitting still to rest felt nearly impossible. Here’s what helped:
– Mixing meds with favorite foods: Liquid ibuprofen blended into applesauce, crushed acetaminophen in pudding.
– Hydration hacks: Popsicles, slushies, and a reward chart for each sip of water.
– Screen time grace: We relaxed screen limits to keep him entertained while resting.
– Sensory-friendly pain management: A cool mist humidifier, soft ice packs wrapped in fuzzy fabric.
By day 7, his breathing was quieter, and he slept more soundly. But the real surprise came weeks later: his teacher noted improved attention spans in class, and his speech therapist observed clearer articulation (likely due to better airflow).
Long-Term Outcomes and Reflections
Six months post-surgery, the changes are profound. His snoring is gone, and he’s less fatigued during the day. While his ADHD and ASD remain central to who he is, addressing the physical discomfort has made it easier for him to engage in therapies and daily routines.
Would we do it again? Absolutely—but we’d advocate even more fiercely for tailored support. For families considering this path, here’s our advice:
1. Find a neurodiversity-affirming care team.
2. Prioritize preparation over speed—even if it delays the surgery date.
3. Track small improvements; some benefits reveal themselves slowly.
Every child’s needs are unique, but for ours, removing tonsils and adenoids wasn’t just about treating a medical issue—it was about giving him a foundation to thrive, on his own terms.
Please indicate: Thinking In Educating » Navigating Tonsil and Adenoid Removal for My Child with ASD and ADHD