I am a regular at our local Market Basket. So much so that I have a preferred cashier and bagger combination: Joan at the register and Kyle bagging groceries. Dream Team. Buckle up, because you will have, with 100% certainty, exited the store before the last note of Michael McDonald’s “What a Fool Believes” plays over the loudspeaker and those eggs will arrive home intact. Joan and Kyle are dependable. Efficient. Consistent. Kind. And sure, the role they play in my life is pretty superficial, but make no mistake, I intentionally seek them out every time I enter that store. They care about their craft and the proof is in the (literal) pudding.
Unfortunately, I don’t have the same confidence I feel at Market Basket in a part of my life where the stakes are infinitely higher: seeking healthcare for my eight-year-old son with profound autism, whom I will call E. In our family’s experience, the standard of care for E is inconsistent at best and traumatic at worst. I see laminated signs in most waiting rooms that promise some version of We are autism informed. Unfortunately, the placard is usually more sentiment than reality. I am not convinced staff, medical, administrative, or otherwise, have received adequate training with regards to the profound slice of the ASD community’s apple. I know this from years and years of lived experience.
Like 19.8% of the general child and adolescent population, E takes prescription medication, and the side effects can create problems that require more intensive intervention, leading us to many medical facilities over the last few years. Make no mistake, along the way, we’ve met healthcare’s version of Joan and Kyle. I embrace and celebrate these providers, administrative staff, security personnel and custodians. I thank them profusely and express my gratitude because to be fair, my son could try the patience of Job. I write down the names of these professionals with the hope of seeing them again when we’re next admitted.
What is far more common is for my husband and I to feel hurried, dismissed, and at worst, ignored when seeking care for our disabled child. Maybe the glossy sign in the waiting room is as literal as my son’s comprehension: that yes, they are aware of the neurodevelopmental condition known as Autism. But awareness alone is not enough. Speaking out is also necessary, or else the current standard of care remains unchanged, reinforcing an unacceptable status quo: that people with profound autism don’t receive the level of care they deserve. I could share countless examples, but one in particular stands out.
Our last trip to the Emergency Room was seven months ago. It was a rotten day that makes me feel sick even now, almost one year later. If my nervous system were a car, that visit felt like being t-boned by an incapacitated driver operating with a suspended license. The harm was foreseeable, avoidable, and horrific to witness.
E was in crisis. He needed a procedure that had to be done in a clinical setting. I clearly communicated what my son needed. The nurse nodded but did not change course. I offered a succinct medical history to support my request. The doctor avoided my gaze and busied herself in the chart. I calmly pled and they calmly steamrolled. There was no collaboration and they made a unilateral decision: E would be physically restrained for the procedure.
Three brawny staff appeared without introduction or explanation and surrounded my son as police would their suspect. E’s eyes widened as six adult arms blocked his typical defense of flight. Their physical force prevailed, while E screamed, bit, and scratched. He pulled hair and tore the collar of at least one shirt. In the aftermath, my son’s body involuntarily shook. E had no understanding as to why adults leveraged their collective weight to anchor him to a hospital bed. Afterwards, E and I were alone. As quickly as a traffic light changes from red to yellow, fear turned into aggression and E lunged toward me like a cornered animal, biting and breaking skin on my forearm, bicep and shoulder. I hit the “nurse call” button. Nobody came. I hit it again. Nobody came. I couldn’t yell for assistance since increased volume would dysregulate E even more. I also feared they would restrain him again, and maybe next time would be worse. I share this story because this is what happens when healthcare workers do not receive adequate training. The call button, a silent scream for help, should not have been my only option. Especially when there’s nobody on the other end.
Clinicians must listen to the parents and caretakers of individuals with profound autism as if the patient himself is speaking. My son has limited expressive language, and when a question requires more than basic labeling, he cannot self-advocate. Add physical pain or heightened stress to that moment and E is even less capable to assist in his own care. The person accompanying him, in this case me, is his interpreter and should be treated accordingly.
To quote a bumper sticker I often see on cars adorned with autism accoutrement, “If you’ve met one person with autism, you’ve met one person with autism.” I implore those in healthcare settings: slow down, listen and collaborate with parents and caregivers. If I’m not taken seriously as my child’s voice, his care cannot be taken seriously. Let’s demand that providers receive the training necessary to offer consistent, ethical, and effective care to those with profound autism. Let’s equip providers with the right tools and resources to do this challenging work and reduce unnecessary harm. When providers partner with caregivers, trust is built and good outcomes follow, clockwork dependability like my neighborhood store. Let’s all take a lesson from Joan and Kyle.