An open letter of support from the directors,faculty,and allies of Leadership Education in Neurodevelopmental and related Disabilities (LEND) programs

Dear Drs. Holmes and Shah and the Neurodiversity Editorial Staff:

Heartfelt congratulations on this new venture. We are directors, faculty, and allies of Leadership Education in Neurodevelopmental and related Disabilities (LEND) Programs, which offer interdisciplinary training experiences to professionals in various fields, family members of people with disabilities (PWD), and PWD themselves. LEND Programs and closely related University Centers of Excellence in Developmental Disabilities (UCEDDs) and Intellectual and Developmental Disabilities Research Centers (IDDRCs) were established during the Kennedy administration to “focus the expertise of the academic community” and address a serious dearth of knowledge in the field of intellectual and developmental disabilities (Fifield & Fifield, 2021). We believe Neurodiversity represents the next wave of diversity scholarship and are particularly excited to see the following values enacted:

An affirmative commitment to the principles of emancipatory research (e.g., Kramer-Roy, 2015), meaning research studies developed: (a) by and in collaboration with persons with disabilities (PWD), and (b) with the explicit agenda of supporting PWD goals and development. As training faculty and advocates for better healthcare, access, and opportunities for PWD, we have found great value in our collaborative writing projects with our fellows who have lived experience. We have written on such topics as virtual advocacy in the early days of the COVID-19 pandemic, creative ways to address the maternal child healthcare workforce crisis, and incorporating cultural brokering into training for those who are persons of color, persons with disabilities, or both; and we would be excited to see similar efforts featured in this journal.

Rigorous research into factors and programs that support and optimize self-determination (Wehmeyer, 2020) as well as shared and supported decision-making for PWD (Burke et al., 2020). For example, we are heartened by the rise of such agencies as the Job Accommodation Network (JAN; https://askjan.org) and its encouragement of inclusion and accommodation for neurodiverse employees; but we would also hope that these programs would be the subject of rigorous empirical study to validate (and, if needed, improve upon) their services’ effects. For these research efforts to reach their full potential, they must embrace the highest methodological and analytic standards of quantitative, qualitative, health economic, and mixed-methods studies.

There is a need for thorough research on how neurodevelopmental profiles vary across genders. The extant literature suggests the need to explore both biological variations that influence the presentation of neurodiversity and potential biases in the mechanisms and assessment that inform the diagnostic process (e.g., Navarro-Pardo et al., 2021). Intentional inclusion of work that considers neurodiversity across the gender continuum will contribute to increased understanding of neurodiversity and help to ensure that diagnosis, treatment, and support services are appropriately tailored to meet the unique needs of individuals.

Lastly, we would be in favor of work that helps to heal the divide between those who believe that celebrating neurodiverse identity invalidates the struggles and pain of caregivers of individuals with “profound autism” and vice versa. From our perspective, the celebration of identity, the treatment of “disorder,” and the accommodation of disability should not be mutually exclusive. Accordingly, we are strongly in favor of efforts to support constructive dialogue and reconciliation between different groups who might find these concepts and terms contentious. Our recent conference, “When it Comes to Autism, Can We Reconcile the Medical and Social Models of Disability?” explored these concepts to very positive effect with a panel that included a developmental-behavioral pediatrician, three autistic self-advocates, and two parents of adult children with varying levels of functioning along the autism spectrum.

Thank you for your attention, and best wishes for your success.

Sincerely,