Naomi Dogan, PhD, still remembers a visit to the hospital earlier this year for blood work, after joining a clinical trial for patients incurring symptoms related to polycythemia vera — one of a group of rare blood disorders known as myeloproliferative neoplasms (MPNs).
In a far corner of the large room a machine quietly hummed behind a curtain, but to Dogan it sounded more like a roaring vacuum cleaner. When a phlebotomist began explaining the upcoming procedure in graphic medical terms, the words triggered a wave of anxiety in Dogan, which only increased when a port (or catheter) was inserted into a vein in Dogan’s inner elbow. Dogan did not realize this step was coming.
“The sensation of the unexpected placement of the port in my skin was horrible,” Dogan, 57, recalls. “I was totally stressed out, and didn’t understand what was happening to me.”
Dogan’s late father had also received treatment for polycythemia vera – in which blood thickened by overproduction of red blood cells causes serious health problems – years before, so they understood the importance of having their blood drawn and tested. As a psychologist for more than 25 years, Dogan was familiar with talking with their own patients about medical issues of all kinds.
They also, however, identify as a neurodivergent autistic individual. Dogan was diagnosed as autistic at midlife, in 2016, and lives with a constellation of coexisting conditions including: depression, complex post-traumatic stress disorder (CPTSD), autistic burnout, rejection sensitive dysphoria (RSD), asthma, more than two dozen common allergies, and gastroesophageal reflux disease (GERD). They have to navigate myriad challenges in daily life including extreme sensory overload, body sensitivity, and trauma-related synesthesia – a condition in which hearing medical language causes extreme discomfort. All this combined to make the experience of drawing labs excruciating.
“That was a tipping point,” reflects Dogan, whose MPN diagnosis came in 2018. “From then on, I started to do a lot more self-advocacy.”
Meeting the need
The steps Dogan took included explaining the details of their condition with their care team in the Adult Leukemia Program, within Dana-Farber’s Hematologic Oncology Treatment Center. This included senior social worker Kristy Katsetos, MSW, LICSW, who now works directly with Dogan’s oncologist, hematologist, and nurses Grace Liu, RN, and Sara Glick, RN.
“Both Grace and Sara have personal life experience with autistic people, so I see them as autistic allies,” says Dogan. “Grace devised how to do a blood draw on my forearm, which is less sensitive than my highly sensitive inner elbow.”
Additional changes have also helped.
“We’ve booked an infusion room so a nurse can privately draw Naomi’s labs in a calm setting, rather than have them go down to the busy lab,” explains Chi-Joan How, MD, Dogan’s hematologist. “Naomi has a lot of symptoms that may be related to their underlying diagnoses, and I have started them on ruxolitinib as part of the clinical trial, which specifically focuses on symptom improvement.”
To provide Dogan and other neurodiverse patients with the most accessible and equitable care possible, Dana-Farber established the Neuro-Inclusive Oncology Care and Empowerment Program in March 2024. Designed to meet the needs of adults with intellectual and/or developmental disabilities (IDD), the new initiative was developed by Psychosocial Oncology and Palliative Care to serve Dana-Farber patients who have IDD, including autism, Down syndrome, cerebral palsy, epilepsy, fragile X syndrome, and more.
Champion advocate
The new program was developed in response to troubling research findings: People with IDD are diagnosed with cancer at later stages, experience delays in their care, and die from cancer at higher proportions than people who do not have IDD.
“There are definitely inequities for patients with cancer and IDD, not just in diagnosing them, but at various points of treatment, such as diagnostic overshadowing,” explains Melissa Levin, LICSW, senior social worker and programmatic specialist for the Neuro-Inclusive Oncology Care and Empowerment Program. “This occurs when medical professionals believe complaints of pain by neurodivergent patients are not connected to their cancer. In Naomi’s case, Kristy and I brainstormed not only about how to get them a private room, but also on making sure they had consistent staff who really knew them and understood their sensitivities.”
Dogan, who as a psychologist has cared for many neurodivergent patients through the decades, knows the importance of having allies during treatment. So do Dogan’s own clinicians, who benefit from their consults with Dogan and each other.
“Naomi is a remarkable self-advocate and has shown tremendous grace to those of us on their team who weren’t as well-versed in working with adult patients who are neurodiverse,” expresses Katsetos. “They offer clear guidance to us about how we can be most helpful during visits. Sometimes, they may need a quieter interaction and, other times, they may benefit from more active conversation. Naomi is always intent on offering this education to us because it can benefit our future neurodiverse patients.”
Dogan, who is also a professional artist and a self-described lifetime learner, is now undergoing specialized training to earn a Neurodiversity Certification and become an Accredited Neurodiversity Coach.
“They are a champion of this type of advocacy,” adds Katsetos. “It’s been a pleasure to work with and learn from them.”
I wish I had known about how to recognize and deal with individuals who were suffering from this condition while I was practicing as a medical professional. It would have made such a difference for the emotional/physiological needs of the patients.
Anyone administering health care needs to have a class in this area.
Thank you for sharing.
Finally! Now that DFCI better understands the obstacles and triggers to adequate care for neurodiverse patients, how do we get the rest of the medical community onboard??