On Sunday morning, Jeanna Reed of AIM (Autism is Medical) and I visited Dorothy and Alex Spourdalakis, who are now on their 21st day in the Loyola Healthcare System. (From left, Jenna, Godmother Agatha, Alex, Lisa).
The restraints have been removed and replaced with a nameless security guard dressed in scrubs and a charge nurse by the name of "Debbie" who wore no identification. They sit in a dark corner of Alex's room beside the door, in silence, until he emotes.
"Don't spit Alex! Don't hit Alex!", the guard barks like clockwork as Alex rises from his bed and lumbers toward him.
The phone and call light have been removed from Alex's room as both were considered "safety concerns." Dorothy must now leave the room to make a call, leaving Alex unattended.
While the security guard remained a constant, another nurse we could not identify by badge entered and left. A physician who referred to himself as "the hospitalist" and a colleague came in to examine Alex.
By that time, he'd awakened and was moving about the room, grabbing food and attempting to speak. While the staff would not allow a phone or call light, a set of silverware, knife included, was present on a meal tray.
With an air of affability completely inappropriate for the occasion, the colleague smiled at Alex and told him he was going to examine him. With little protest and a few pulled chin hairs, he was able to briefly listen to Alex's lungs and midsection.
As the mother of a child with autism, I was wondering how Alex was keeping it together. As he rocked naked on a bed amidst a room full of strangers, he presented only sensory problems, which he self-regulated by chewing on a strip of sheet from his bed. Despite Loyola's advertisement of medical professionals that are "always in reach," there was nary an autism specialist among the group. No therapists. NO BCBAs to educate the staff handling him. No occupational therapy. Not even a chewy tube to help facilitate his need to bite.
One of the nameless nurses questioned Dorothy's judgment in allowing Alex to chew on a torn piece of sheet. "I'm just concerned he'll choke" she said. With an educational and articulate tone of authority, Dorothy explained how the sheet was soothing his sensory needs. Instead of justifying his behavior, or lashing out at her ignorance, Dorothy simply educated her. When Dorothy speaks, though, most staffers gaze at the floor and roll their eyes.
Alex finally became irritated with all the chatter and bodies in the room. With the deft reflexes only the parents of small toddlers and autism parents possess, Dorothy sprang into action, shuffling his naked teenage body off to the bathroom for a shower.
"So, what is the medical plan in place for Alex?" Jeanna asked. Prior to this question, there had been much conversation about Alex's constipation and uninvestigated bowel issues. The hospitalist smiled through his response, "While I cannot do the procedure today, I can at least introduce Miralax." Jeanna questioned the point of this, since magnesium citrate was already attempted, to no avail. "What are you treating, though? Have you considered an X-ray, CT scan, scope?" Jeanna asked.
The doctors shrugged their shoulders.
Since Alex remains in a state of agitation, experiencing only fitful and short-lived sleep as well as extreme pain, Jeanna remarked that the psyche/behavior model Alex's medical team has enforced thus far did not appear to be working. On this point, the hospitalist and colleague nodded in agreement. I handed him a paper by Dr. Arthur Krigsman. However, the medical team at Loyola had already been given extensive research by the members of AIM. "We went over it a little bit," was the hospitalist's response when asked if they'd read the data.
"We are thinking we may give him something for his allergies and see if that helps with the discomfort," the colleague commented. It was then that Agatha, Alex's godmother and Dorothy's only support, could take no more. "But how do you know? How do you know what is bothering Alex when you do not test? Why do we give him medication after medication without knowing?"
The hospitalist rested what was meant to be a reassuring hand on her shoulder.
Jeanna continued to run off the litany of medical issues that may be at play. "I know it sounds crazy, I do. But many of these children present with bowel disease and mitochondrial dysfunction. He could have GERD, duodenitis, esophagitis, ulcers in the small intestines, colitis. How can we know if we don't test?"
"I am just looking for things I know we could treat him with today," the hospitalist responded.
" Well, clearly the rash is subsiding, so adding another med would not work when weighing the risk/benefit ratio," Jeanna commented. The hospitalist nodded. "He could have an underlying mitochondrial or metabolic disorder. You are feeding him all protein and he may have an underlying metabolic disorder. How do we know if his system can handle that?" Jeanna asked.
"My immediate concern is Alex's safety," he replied. To me, a non-medical person who has been forced into the awful and tedious practice of having to read medical journals and scientific studies, this response is a non-answer disguised in the form of concern.
The colleague piped up. "Autism is very much a mystery, you have to understand."
And, that ... my friends ... is when I lost it. "No! No! It's not. It's a medical illness that causes bad behavior. All you have to do IS READ*!"
Dorothy and Alex remain in Loyola with Agatha as their only support. No gastrointestinal or mitochondrial work ups were scheduled during our visit.
*Dr. Arthur Krigsman Theories of Gut-Brain Axis Involvement in Childhood Developmental Disorders
* Pediatrics Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report
The Pediatrics Study, which included some of the top GI and mitochondrial specialists in the nation concluded: The care of individuals who are nonverbal or have difficulties in communication or who display self-injurious or other problem behaviors presents special challenges. Nevertheless, the approach to evaluation and diagnosis of possible underlying medical conditions, in particular gastrointestinal disorders, should be no different from the standard of care for persons without ASDs. Management of cooccurring gastrointestinal problems in individuals with ASDs usually begins with the primary care provider and may eventually warrant multidisciplinary consultation.
Lisa Joyce Goes is a Contributing Editor for Age of Autism, Co-Founder of The Thinking Moms' Revolution, and Co-Author of the book, The Thinking Moms' Revolution.