Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co-morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co-morbidities and other adverse health issues at higher rates than those who entirely switch to an adult-care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decisionmaking capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.

IntroductionMedicine may select for autistic characteristics. As awareness and diagnosis of autism are growing, more medical students and doctors may be discovering they are autistic. No studies have explored the experiences of autistic doctors. This study aimed to fill that gap.MethodsThis is a cross-sectional study. A participatory approach was used to identify the need for the project and to modify a pre-existing survey for use exploring the experiences of autistic doctors.ResultsWe received 225 responses. 64% had a formal diagnosis of autism. The mean age of receiving a formal diagnosis was 36 (range 3–61). Most were currently working as doctors (82%). The most common specialties were general practice / family medicine (31%), psychiatry (18%), and anesthesia (11%). Almost half of those working had completed specialty training (46%) and 40% were current trainees. 29% had not disclosed being autistic to anyone at work. 46% had requested adjustments in the workplace but of these, only half had them implemented.Three quarters had considered suicide (77%), one quarter had attempted suicide (24%) and half had engaged in self-harm (49%). 80% reported having worked with another doctor they suspected was autistic, but only 22% reported having worked with another doctor they knew was autistic. Having never worked with a potentially autistic colleague was associated with having considered suicide.Most preferred to be called “autistic doctors” (64%). Most considered autism to be a difference (83%). Considering autism to be a disorder was associated with preference for the term “doctors with autism,” and with having attempted suicide.ConclusionAutistic doctors reported many challenges in the workplace. This may have contributed to a culture of nondisclosure. Mental health was poor with high rates of suicidal ideation, self-harm, and prior suicide attempts. Despite inhospitable environments, most were persevering and working successfully. Viewing autism as a disorder was associated with prior suicide attempts and a preference for person-first language. A neurodiversity-affirmative approach to autism may lead to a more positive self-identity and improved mental health. Furthermore, providing adequate supports and improving awareness of autistic medical professionals may promote inclusion in the medical workforce.

Studies have suggested that autistic individuals are as much as 30% more likely to receive a cancer diagnosis which may be associated with co-occurring IDD or birth defects. Following a diagnosis of cancer, outcomes have been documented to be significantly worse for autistic individuals. Autistic individuals experience numerous barriers to care across healthcare settings, including a lack of appropriate communication with providers, a lack of accommodating healthcare environments, lack of mental health support, and too few providers who are trained in working with individuals with autism or IDD. This leads to numerous negative health outcomes, including lower likelihood of having a regular source of care, lower satisfaction with healthcare, reduced screening utilization, delays in recognizing early symptoms of disease, higher ED utilization, and anxiety and stress associated with healthcare visits. We report on the results of a recent Medical Oncology provider survey conducted from 10/31/22 - 12/16/22 to evaluate for opportunities to address barriers to care facing individuals with autism and/or IDD. Of the 49 respondents comprised of physicians and nurse practitioners, 93.9% (46) noted receiving five or fewer hours of specific training or education regarding caring for populations with IDD. Additionally, providers cited the following barriers most commonly related to delivery care to patient with IDD: Lack of strategies to enhance communication on site (32, 65.3%), Inadequate time allotted for visits (28, 57.1%), Inadequate staff training and education related to this group (27, 55.1%), Limited resources to support vulnerable or lower socio-economic status populations (22, 44.9%), and Fragmentation of care (19, 38.8%). The Sidney Kimmel Cancer Center and the Jefferson Center for Autism & Neurodiversity have collaborated to develop a culturally competent care design aimed at understanding the needs of our neurodiverse population through a joint research effort. The results of our Medical Oncology provider survey identified the need for training of providers and staff to optimize the patient experience, creation of accessible cancer screenings, and the adoption of an environment that supports the sensory and communication abilities and needs of neurodivergent patients. Providers that adopt best practices in the care of autistic and/or IDD individuals have noted that patients and families report marked improvement in the rating of their patient experience in the visit. The desired product is care plans, appropriate medical settings, and trained providers that will meet the needs of this population and improve overall health outcomes. Citation Format: Avnish K. Bhatia, Alexander Fossi, Brooke L. Goodspeed, Jane Tobias, Christopher McNair, Dwight McBee, Wendy Ross. The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 2 (Clinical Trials and Late-Breaking Research); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(8_Suppl):Abstract nr LB138.

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