Developmental screening has enhanced the ability of pediatricians to identify and address developmental concerns. Overall, the age of initial evaluation and entry into services has improved over time.1 Yet, barriers and long wait times remain, particularly for families from historically marginalized populations.
Research has found that parents raising a child with a developmental disability can highlight strengths such as patience and gratitude.2 However, some parents may also experience increased stress and mental health concerns, including depression.3 Furthermore, research has identified stressors unique to Black* families parenting an autistic child.3 These stressors are multiplied while families are waiting for evaluation and intervention services because of diagnostic uncertainty and lack of therapeutic supports.4
We report on an interdisciplinary collaboration of parents, medical providers, social workers, and community organizations on the adaptation and implementation of a program to support Black children awaiting an autism evaluation, highlighting the benefits of creating bridges among interdisciplinary fields.
Intersecting Goals Leading to Program Development
Dr Shaia (Black Parent of an Autistic Young Adult; Social Work Researcher and Educator)
My son John, now 23 years old, was not diagnosed with autism until he was 10 years old, although I knew before 15 months that he was not developing typically. I suspected autism, but none of his providers agreed. I often felt that all his providers looked only at one part of John, whatever they suspected might be the problem from the lens of their own discipline. I did not feel that they considered him a whole person. John’s experience is not uncommon, as I have heard the same from other Black caregivers. Many families visit several providers from different disciplines, seeking answers. Zavaleta-Ramirez et al.5 report that the path to diagnosis of autism often includes multiple visits to developmental and mental health professionals, often not resulting in a diagnosis until the eleventh contact.
I found my experience with John echoed by other Black caregivers when we chatted at school, the pediatrician’s office, or out in the community. As I talked with other families and realized my family’s experience was not unique, I became interested in better understanding the challenges other Black families face. My work involves examining antiracist and antioppressive social work practice and, as it became clear that much of my experience with John was impacted by race and racism, I became more interested in understanding the experiences of families and how to improve those experiences.
Dr Dababnah (Social Work Researcher and Educator)
In my previous work as a clinical social worker specializing in developmental disabilities, I have witnessed the additional challenges facing Black and other individuals of color to access timely, culturally relevant care. When I first began working with Dr Shaia nearly a decade ago, we discussed these barriers and what was then a tremendous gap in the literature to address racial and socioeconomic disparities in autism care. Thus, we began to collaborate with a range of stakeholders and conducted research to document the perspectives of parents of Black children. Surprisingly, although racial disparities had been well-described in the academic literature, the root of these inequities was not well understood. Thus, we published a series of papers on topics that centered on the voices of families of Black children, such as autism screening and referral practices,6 inclusion in research,7 key stressors,3 and coping strategies.8
One consistent message I received from families in our community-based research was the need for dedicated spaces for families of Black autistic children to discuss their unique strengths and concerns with others who understood their experiences. I was fortunate to meet many Black advocates for autistic people, including Ms Southerland and Ms Adere, both with lived experiences as parents raising autistic children and leading community organizations supporting Black families. They ultimately collaborated with me and other researchers, clinicians, and advocates from the University of Maryland Baltimore (Drs Reyes, Badawi, and Shaia) to pilot a parent-led program, Parents Taking Action (PTA), for parents of Black children waitlisted for autism or developmental concerns.
Ms Southerland (African American Mother of an Autistic Son, Sibling of an Autistic Sister, and Founder of Brown on the Spectrum)
As the sibling of a woman with autism, I witnessed my mother navigate services in 1980s Baltimore City. Being side by side with my mother’s advocacy and research methods led to me being more observant of my own child’s early development. As such, we were well-equipped to know where to reach out for trusted services and more information. However, some families may not have the resources and support to be able to navigate the system and access services.
While working on a project with another university-based autism center, one of my collaborators suggested that I connect with Sarah Dababnah and Wendy Shaia because the PTA program was specifically designed to work with Black parents in Baltimore City. Because Black and Brown parents are the focus of my organization, Brown on the Spectrum, I reached out. The key point of interest for me was that the PTA program would focus on providing research for this specific group as it is severely underrepresented in autism research.7
Ms Adere (African American Parent of an Autistic Child; Founder of the Ethiopian Eritrean Special Needs Community)
I met Sarah Dababnah during an outreach event of a national organization to our community (Ethiopian Eritrean Special Needs Community). Because I am very much interested in programs that support parents of children with autism, particularly those who have limited access to services and resources, I accepted Sarah’s offer to become a Parent Leader of PTA.
Drs Reyes and Badawi (Developmental-Behavioral Pediatricians)
In our clinical experience, after months on the waitlist, some patients present to the clinic for an evaluation and have not yet accessed early intervention or school services, for reasons such as lack of information, inability to connect with service providers, stigma, and/or competing home and work demands. Recognizing the needs of families while awaiting a developmental evaluation, we were determined to explore innovative mechanisms to improve care for our patients in Baltimore. Stepping outside the confines of our clinic and learning about the work of Drs Dababnah and Shaia, our collaboration with the team of researchers, parents and community organizations created an opportunity to support families on our waitlist through PTA.
Adaptation of Parents Taking Action
Parents Taking Action, originally developed to address service disparities affecting low-income Latinx families raising autistic children, has been culturally and developmentally adapted for various ethnic populations and age groups.9 PTA is a manualized intervention that includes stories, discussion points, and video links on typical child development; specific information on autism; and social support and stress management skills. Peer interventionists (“Parent Leaders”) deliver PTA one-on-one to participants using stories, videos, and discussion.
Based on input from a community advisory board, which included an autistic person, parents and grandparents of autistic people, clinicians, and other stakeholders in Baltimore, we made revisions to the original version of PTA that included increasing diversity in the names and images in the manual to better reflect the target audience, highlight common challenges related to diagnostic delays, and update resources specific to the area.10 Our Parent Leaders, who delivered PTA to participants, were also parents of Black autistic children.
Ms Southerland, Ms Adere, and other community collaborators provided valuable input on the adaptation, implementation, and evaluation of PTA for Black communities. Ms Southerland was a critical liaison to help us better understand the needs of Baltimore families, whereas Ms Adere offered insight into the needs of immigrant communities, and both assisted in adapting materials for PTA while also serving as Parent Leaders. Considering the significant external challenges facing Black communities affected by poverty and structural racism, our adapted PTA version also offered social work services to assist with food, housing, translation, and other needs.
As the PTA team was developing materials, one thing that I always talk about is that in today’s “instant” culture, getting information quickly is key when communicating messaging. We thus created a streamlined, one-pager for families with quick contacts related to autism resources versus providing multiple flyers.
Being a parent of an African American child with autism and having an educational background in evidence-based interventions and special education gave me the experience to understand parents and ways to teach parents. I shared several resources and information with the team that would be helpful for parents. For example, behavior management tools such as a token system, visual schedules for several daily routines, social stories, pictures, list of toys, step-by-step directions for daily living skills, and list of dos and don’ts at Individualized Education Program meetings.
Benefits of PTA on Families and Overall Care
My personal and professional experience helped me a lot to guide parents as their Parent Leader. While I delivered the PTA training sessions, parents had the opportunity to consult with me to address their questions and concerns about their child’s behaviors and development. All the parents I worked with expressed to me how overwhelmed they were by the challenges their children had. By the end of the program, they were all in a much better space and able to implement strategies they learned in the sessions. The parents were very grateful for the resources I shared with them. Parents were also saying that they learned a lot and that they are ready to face challenges their child might encounter. One parent said to me that if issues arise with her child, she can handle them. Another parent said that she understood what services her child needs as a result of the PTA program. My overall experience was amazing. Making a difference in others’ lives has always been my passion.
By incorporating a variety of resources within a child’s action plan of service delivery, I helped families as their Parent Leader to gain a better understanding of how to apply recommendations within a number of areas including home, school, and social settings. Families enrolled in the PTA program were able to regularly reference information received from medical and educational professionals alongside detailed scenarios in the PTA manual that led to a better understanding of how to incorporate recommendations realistically into the family’s daily routines.
As clinicians, we also noted benefits from the PTA program as parents appeared more comfortable disclosing concerns about their child’s development with their provider and advocating for their child’s needs. PTA also provided the opportunity for the social work team and medical providers to work together to provide assistance with care coordination when needs were identified during PTA sessions or clinic visits.
Drs Dababnah, Reyes, Badawi, and Shaia
Our pilot trial of PTA with parents of Black children waitlisted for an evaluation revealed significant pre- and postintervention improvements in family outcomes (eg, understanding child’s strengths, needs, and abilities) and parent depression.4 As in our previous community-based PTA study, participating parents also really appreciated that the program was led by other parents of Black autistic children, such as Ms Adere and Ms Southerland.
Recommendations for Health Care Providers
The PTA program provides an example of how interdisciplinary work can break down silos to provide culturally relevant care.
We encourage pediatricians and other health care providers to:
Seek and foster collaborations outside one’s own discipline as a pathway in developing innovative approaches to support families from diverse racial ethnic backgrounds.
Involve families and community partners in the various aspects of support programing from program development, implementation, and dissemination of findings.
As pediatricians, we strive to provide the best care for children and their families. However, in our daily work, we may become siloed in our fields. Interdisciplinary collaboration can lead to a more holistic approach to supporting families, particularly those from communities of color. Working together with families, community organizations, allied health professionals, and researchers can create opportunities to leverage the unique skills and expertise of each member, thereby providing a better understanding of community needs and developing culturally relevant approaches to respond to these needs.
Dr Shaia is the executive director of the Center for Restorative Change at the University of Maryland Baltimore School of Social Work. Ms Southerland is the founder of Brown on the Spectrum. Ms Adere is the founder of the Ethiopian Eritrean Special Needs Community. We acknowledge their work with PTA and their generosity to share their lived experiences as family members. We also appreciate the support and contributions of our advisory board, social work team, Dr Sandy Magaña, and parent participants, without whom our work would not be possible.
For consistency and inclusivity, we used the term Black in this manuscript to refer to individuals of African descent. However, in describing their roles and identities, Ms Southerland and Ms Adere have self-identified as African American, and thus we retained their original language. Furthermore, in the section by Ms Southerland, Black and Brown are used to refer to people of color.
We also acknowledge that there are different preferences in self-identification in autism; thus, we used both identity-first and person-first language in this manuscript.
Drs Reyes and Dababnah worked with the entire team to conceptualize the manuscript, drafted their respective sections, and critically reviewed and edited the manuscript; Ms Southerland, Ms Adere, and Drs Shaia and Badawi contributed to the design of the manuscript, prepared their respective sections, and critically reviewed the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Clinical Trial Registration: This trial has been registered at www.clinicaltrials.gov (identifier NCT04313283).
FUNDING: Support was provided by the University of Maryland, Baltimore, Institute for Clinical & Translational Research (ICTR) and the National Center for Advancing Translational Sciences (NCATS) Clinical Translational Science Award (CTSA) grant number UL1TR003098.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose. The funder/sponsor did not participate in the work.