A few years ago, author and autism advocate Jennifer Cook O’Toole was at the hospital in excruciating pain. She had just undergone a double-vertebral fusion, her fourth spinal surgery in three years. Her postoperative medication had begun to wear off, and she was barely lucid.
The nurse held up a pain chart, one of those familiar in a hospital setting, with a scale and associated sad or smiling faces — 0 for no pain and a smiling face, 10 for the worst pain possible and a face in extreme distress.
“Can you tell me what your pain level is at right now?” the nurse said, pointing to the chart.
But O’Toole couldn’t. In her mid-30s, she was identified as having autism, and so the numbers and faces did not make sense to her.
The nurse began to explain how the numbers related to faces expressing emotions, but O’Toole interrupted him.
“And I said, ‘Sir, the issue is not a cognitive association between the faces or the subjective numbers. The problem is that it’s so subjective that I can’t understand what 6, 8, 9 means to me versus to you.’”
She continued, spiraling into a discussion of whether 10 meant the worst she has ever felt, or could ever feel, or would ever feel. Or did it mean the worst anyone has ever felt in the world at any time — or maybe something else?
The nurse was lost. Finally, when O’Toole finished, he said again, “So, can you tell me what your pain level is at right now?”
O’Toole began crying and realized that, although she was verbal, she was as uncommunicative in that moment as another person on the autism spectrum who was nonverbal. And she knew the health care system was not set up to help her get the best care possible.
Embarking on an inclusive approach
Jefferson Health is trying to change that, and it’s brought O’Toole on as a consultant for a new systemwide initiative that seeks to make health care more autism-friendly.
“There’s so much damage that can simply be changed by helping to identify what autism looks like,” O’Toole said, “and then helping to respond to it in a responsible, humane way.”
Spearheaded by Jefferson’s Center for Autism and Neurodiversity, which is run by developmental and behavioral pediatrician Dr. Wendy Ross, the initiative will train staff throughout the Jefferson system — from receptionists to physicians — to better understand how people on the spectrum experience the world.
The program will start at Jefferson’s Navy Yard location and will eventually move throughout the system, practice by practice. Ross, who was a 2014 CNN Hero, said the changes will benefit many patients beyond those on the autism spectrum.
“A lot of the strategies that we talk about, frankly, are ways that we all want to be treated,” she said. “Sometimes, we all need an extra minute to process what’s being told to us, especially in a stressful environment, especially if we’re getting bad news medically. Sometimes, we just need somebody to take an extra minute with us.”
Beyond familiarizing staff with the differing needs and perspectives of a neurally diverse patient population, the program will outfit various offices with autism-friendly accommodations, from chairs that rock to noise-canceling headphones and small objects called “fidgets” for patients who need to occupy their hands.
But Ross said those, too, will improve care for everyone.
“Just like ramps were designed for wheelchairs but are used by people in walkers and moms with strollers,” she said, “we’re not really talking about inclusion, we’re talking about a new way of thinking about universal design.”
Taking time to really communicate
The first steps toward that concept of universal design are on display at the Jefferson Continuing Care Program at the Navy Yard, a primary-care practice for adults with complex childhood-onset conditions including autism, Down syndrome, cerebral palsy, and spina bifida.
Run by primary-care doctor Mary Stephens, the office features oversize exam rooms, big enough for patients with multiple caregivers and portable ventilators. There are rocking chairs, headphones and fidgets, but also firmer exam surfaces that move up and down, making it easier for those with conditions like cerebral palsy.
The patients Stephens sees have aged out of the pediatric system and often have difficulty finding physicians who will provide the same level of care for them as adults.
“It’s kind of like falling off a cliff,” Ross said. “It’s not enough to just catch people when they fall. And it’s not enough to just try to catch them before they hit there. We need to really have a continuity of care.”
That’s what Stephens said her practice aims to do.
“We’re here to really close that gap to make people feel welcome,” she said, “to do what we have to do to meet their needs.”
That includes hourlong initial visits because sometimes it takes that long to figure out how best to communicate with the patient. Follow-up appointments are 30 minutes. If a patient isn’t comfortable with a certain procedure, such as having blood drawn, they’ll talk about it and maybe practice getting the tourniquet on and stop there.
“We’re OK not getting everything done at an initial visit,” Stephens said.
A key part of treating neurally diverse patients is developing a relationship with the patient so that he or she feels comfortable and understood.
Stephens recalled a recent appointment with a nonverbal autistic patient who communicated via a letterboard.
“It was fantastic,” she said. “We had a great conversation about his headaches and the books that he’s reading. And we had time to build that rapport, so when it came time to do an exam, he was willing to let me look in his ear.”
It turned out the reason he was having headaches was because he had a sinus and ear infection.
“We need to take time to communicate and create that bond with them,” Stephens said. “We may get the response from them maybe a few visits down the road or 20 minutes into our encounter with them, but we need to try.”
Opening the doors
Stephens appreciates the challenges many of her patients’ families face because she has gone through some of them herself. About eight years ago, she gave birth to her daughter, Callie, who was given a surprise diagnosis of Down syndrome in the delivery room.
It came as a shock to Stephens and her husband, and it took a long time to assemble a medical team to care for their daughter.
“I was able to appreciate what it’s like as a parent,” she said. “It was hard even as a two- physician-parent family to get Callie what she needed. But when we found the right team and the right people to care for her, doors opened. Now she’s thriving.”
That, she said, is what every family deserves.
“Now, I get to partner with Dr. Ross and Jennifer O’Toole and really help build that wraparound team so we can open the doors for patients and then make it be a meaningful experience once they get here.”
Ross said that extra level of care is something all patients, regardless of their needs, should have.
“A lot of what underlies this program is the way we should all be treating each other,” Ross said.