Family involvement in the Autism Intervention Research Network on Physical Health, the Autism Treatment Network, and the Autism Learning Health Network, jointly the Autism Networks, has evolved and grown into a meaningful and robust collaboration between families, providers, and researchers. Family involvement at the center of the networks includes both local and national network-wide coproduction and contribution. Family involvement includes actively co-authoring research proposals for large grants, equal membership of network committees and workgroups, and formulating quality improvement pathways for local recruitment efforts and other network initiatives. Although families are involved in every aspect of network activity, families have been the driving force of specifically challenging the networks to concentrate research, education, and dissemination efforts around 3 pillar initiatives of addressing comorbidities of anxiety, attention-deficit/hyperactivity disorder, and irritability in autism during the networks’ upcoming funding cycle. The expansion of the networks’ Extension for Community Healthcare Outcomes program is an exciting network initiative that brings best practices in autism care to community providers. As equal hub members of each Extension for Community Healthcare Outcomes team, families ensure that participants are intimately cognizant of family perspectives and goals. Self-advocacy involvement in the networks is emerging, with plans for each site to have self-advocacy representation by the spring of 2020 and ultimately forming their own coproduction committee. The Autism Treatment Network, the Autism Intervention Research Network on Physical Health, and the Autism Learning Health Network continue to be trailblazing organizations in how families are involved in the growth of their networks, production of meaningful research, and dissemination of information to providers and families regarding emerging work in autism spectrum disorders.
The Autism Speaks Autism Treatment Network and Autism Intervention Research Network on Physical Health
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. According to the Centers for Disease Control and Prevention, autism affects an estimated 1 in 59 children in the United States today.1 Autism can typically be reliably diagnosed by age 2, but associated developmental delays can appear even earlier.2 The Autism Speaks Autism Treatment Network (ATN) and Autism Intervention Research Network on Physical Health (AIR-P) have more than a decade of work in the care, treatment, and research of ASDs (see Coury et al3 in this issue). Families, caregivers, and self-advocates have a strong and equal voice in all aspects of ATN and AIR-P work to ensure that network-related activities and goals are aligned with those in the autism community. They are also coproducers on all network projects, rather than seen as consultants or contributors, and are fundamental to the essence of the network. Thus, it is important to note that this article is authored by 4 past and present network family advisory committee (FAC) co-chairs contributing their insights and learnings through their past decade of network contributions.
History of Family Involvement in the Network
Historically, the ATN formed as a clinical network in 2005 and had its first expansion in 2008. In 2009, the ATN and AIR-P began working with its first family representative, who provided 1 family’s opinion on network projects. Over the course of the following 2 years, it was recognized that, although valuable, 1 family’s perspective was not sufficient to serve and represent the numerous and diverse families receiving care from a large international network. It was also not enough to truly insert family engagement and priorities into network initiatives. Recognizing this, in 2011 the ATN and AIR-P revised its plan for collaboration with families to include a network-wide FAC with 2 co-chairs and 2 FAC representatives from each of the clinical sites across the network.
A decade ago, Silverman and Brosco4 described the often-precarious partnership of patient advocacy groups with autism researchers. In the ATN and AIR-P, there were some growing pains, which were met with some misunderstanding of the potential valuable role of families and caregivers. Through open communication, collaboration, partnership, and transparency among the network leadership, family involvement continued to grow, and the family perspective began to take a more prominent role in the ATN and AIR-P. The network Medical Director, Dr Daniel Coury, states the following:
Over the years, network leadership has come to appreciate the family perspective more and more when identifying new interventions to study. This is perhaps best exemplified with the approach to the AIR-P renewal process in 2015 when the principal targets for the learning network initiative of the AIR-P were selected by the FAC.
Over time, the network embraced the important role of parents and caregivers in research, quality improvement, dissemination, outreach, and leadership. This led to the mission of the FAC: sharing the family experience of the daily challenges and concerns of living with autism in a productive and informative way to advise and assist clinicians, researchers, and professionals in the field with research, treatment, and care priorities while shifting the traditional clinic-centered care model to a focus of family-centered clinical care, incorporating shared decision-making among all parties involved.
Current FAC Structure and Contributions
The members of this FAC contribute to all levels of network leadership and provide invaluable insights when planning and conducting research and clinical care endeavors. Over time, the FAC has grown from 1 volunteer to a network of leaders and partners joining together in numerous areas, including developing and implementing network activities at the network and site levels, providing a family perspective and advice on developing clinical and research priorities, and facilitating the inclusion of families into the network’s activities and plans. Family involvement has helped ensure that ATN and AIR-P research is important and meaningful to families and that clinical and related services are family centered and accessible. Fiks et al5 detail their own experience in improving parent and patient involvement in their practice-based research networks. We affirm that such authentic partnership between families, researchers, and physicians across all levels of our network is critical to reach our goals.
FAC Structure
As previously mentioned, each of the clinical sites affiliated with the network (currently 12) has a local FAC (described briefly below). Two members from each of these local FACs form the national ATN and AIR-P FAC members. The network FAC collaborates on strategic planning to promote the mission and activities of the network. In 2018, a family advisory charter was created to guide the work of the FAC and to promote family participation across network activities. The charter is instrumental in outlining national and local objectives and is a useful tool for onboarding of new family members. Entry into network activities and committees can be overwhelming, and the charter organizes opportunities for onboarding participation. Additionally, the charter serves as a guide to ensure family advisors understand opportunities and expectations for involvement. For example, national FAC members are asked to attend 80% of calls and meetings and to choose targeted committee involvement per their interest. The charter also outlines a compensation plan for the effort of FAC members by activity and effort. For example, FAC members are compensated for achieving 80% attendance on network calls, for attendance at in-person meetings, and for other efforts that further demonstrates the network commitment and acknowledgment that family time is valuable and must be compensated. The FAC meets monthly via a video-call platform. Times of calls vary to accommodate the schedules of different FAC members.
The 2 FAC co-chairs are selected to serve a 2-year term. They are part of the network steering committee and set strategic goals. Co-chairs represent the entire FAC and work hard to ensure that they are providing input representative of the parent partners whom they serve. The co-chairs work with network leadership to guide the direction of projects nationally and locally, help set agendas and goals for in-person meetings, and ensure all initiatives across the network are infused with a family voice.
FAC and Family Roles
Families also play a key role in advising and co-producing network activities at a national level. FAC members act as reviewers of research articles and research grants, advisors or co-producers for research projects, and scientific review committee members. FAC members are active on most network-wide committees, including those devoted to clinical care, guideline development, disparity reduction, and dissemination. For example, parents on the diagnostic algorithms committee worked with network clinicians to inform best practices surrounding accessible and efficient diagnosis. One parent serves as a research advisor on the dental care research project and provides his expertise as a dentist and a father to inform research protocols and best practices. Several parents have been involved in the network’s Extension for Community Healthcare Outcomes (ECHO) projects, and each of the 10 network sites has a parent serving as a faculty member on the ECHO hub team. As the network spreads the use of the ECHO model, family members are included as faculty. The network generates and disseminates care tool kits. More than 20 members of the FAC have been involved in the review of all tool kits disseminated by the network. Descriptions of network activities and workgroups that FAC members are involved in can be found in Table 1.
Overview of Network Activities and Family Impact
| Activity . | Goal . | FAC Involvement and Impact . |
|---|---|---|
| Tool kit translation and dissemination workgroup | To focus on enhancing the current ATN tool kits and making them more usable for our patients and their families, including underserved populations (eg, rural areas, racial and ethnic minorities, and those with lower socioeconomic status) | An FAC member was involved in shortening these tool kits for easier digestion and improving the reading level so that they are more accessible to diverse audiences. An FAC parent was involved in creating and editing 1-pagers that represented the tool kit information in a more practical format. |
| Research in lay language workgroup | To describe key AS and ATN research findings in plain language and group them by topic to facilitate dissemination to outside users and stakeholders, including parents, community partners, and apprentice autism centers | FAC partners helped write lay summaries of network research publications and ensured that each topic summary was at an appropriate reading level for more accessible consumption. |
| ECHO Autism | ECHO has incredible outreach in which family representatives are an integral part of training and educating new community professionals in autism care and treatment. | FAC members are involved in all aspects of the ECHO research and care initiatives by using a telementoring model and case discussions with community providers. This is a powerful opportunity for first-line physicians to hear directly from families about how to improve care and health outcomes for families with a child with autism. |
| Behavior science committee | To provide consultation to the ATN in conducting research, education, clinical care, and quality improvement initiatives that include issues related to both the assessment of children with ASD and behavioral health issues. We are committed to supporting evidence-based practices in both the diagnosis and treatment of ASD and related disorders. | Family partners are engaged in all meetings and discussions focused on improving the behavioral health of children with ASD. Family advisory members provide input regarding improvements to diagnostic and assessment clinical practices as well. |
| Diagnostic algorithms workgroup | To develop a clinical algorithm or multiple compatible algorithms involving a minimum assessment for the diagnosis of ASD in children 0–3 y and >4–18 y | An FAC member was involved in meetings and discussion to streamline assessments captured at network sites. This was also designed to reduce the wait time to diagnosis for patients. |
| Review of systems | To streamline the standard-of-care comorbid conditions checklist that is collected at every medical appointment | An FAC member’s input was used to identify what information is important to gather from families at each clinic visit. This standardizes a way to collect information regarding concerns that a family member may have about their child’s health. |
| Sleep committee | To improve sleep hygiene for children with autism and their families, including bedtime routines, night wakings, and parent sleep habits | An FAC member is actively participating in calls to plan and create a literature review regarding night wakings in children with autism. The family member is also critical. |
| Signature studies workgroup | To prepare, submit, and administer both internal and external research grants with the aim to decrease autism comorbidities | FAC members are active participants in grant development. They participate in the biweekly workgroup teleconference. |
| Steering committee for ATN, AIR-P, and ALHN | To steer the network regarding clinical standards and research objectives. Members will be actively engaged in the key aspects and deliverables of the network and serve as a liaison to their respective sites. | FAC co-chairs are full steering committee members and are active in all steering committee responsibilities, calls, and meetings. Co-chairs also represent the FAC voices as a whole and ensure that parent perspectives are represented. |
| Activity . | Goal . | FAC Involvement and Impact . |
|---|---|---|
| Tool kit translation and dissemination workgroup | To focus on enhancing the current ATN tool kits and making them more usable for our patients and their families, including underserved populations (eg, rural areas, racial and ethnic minorities, and those with lower socioeconomic status) | An FAC member was involved in shortening these tool kits for easier digestion and improving the reading level so that they are more accessible to diverse audiences. An FAC parent was involved in creating and editing 1-pagers that represented the tool kit information in a more practical format. |
| Research in lay language workgroup | To describe key AS and ATN research findings in plain language and group them by topic to facilitate dissemination to outside users and stakeholders, including parents, community partners, and apprentice autism centers | FAC partners helped write lay summaries of network research publications and ensured that each topic summary was at an appropriate reading level for more accessible consumption. |
| ECHO Autism | ECHO has incredible outreach in which family representatives are an integral part of training and educating new community professionals in autism care and treatment. | FAC members are involved in all aspects of the ECHO research and care initiatives by using a telementoring model and case discussions with community providers. This is a powerful opportunity for first-line physicians to hear directly from families about how to improve care and health outcomes for families with a child with autism. |
| Behavior science committee | To provide consultation to the ATN in conducting research, education, clinical care, and quality improvement initiatives that include issues related to both the assessment of children with ASD and behavioral health issues. We are committed to supporting evidence-based practices in both the diagnosis and treatment of ASD and related disorders. | Family partners are engaged in all meetings and discussions focused on improving the behavioral health of children with ASD. Family advisory members provide input regarding improvements to diagnostic and assessment clinical practices as well. |
| Diagnostic algorithms workgroup | To develop a clinical algorithm or multiple compatible algorithms involving a minimum assessment for the diagnosis of ASD in children 0–3 y and >4–18 y | An FAC member was involved in meetings and discussion to streamline assessments captured at network sites. This was also designed to reduce the wait time to diagnosis for patients. |
| Review of systems | To streamline the standard-of-care comorbid conditions checklist that is collected at every medical appointment | An FAC member’s input was used to identify what information is important to gather from families at each clinic visit. This standardizes a way to collect information regarding concerns that a family member may have about their child’s health. |
| Sleep committee | To improve sleep hygiene for children with autism and their families, including bedtime routines, night wakings, and parent sleep habits | An FAC member is actively participating in calls to plan and create a literature review regarding night wakings in children with autism. The family member is also critical. |
| Signature studies workgroup | To prepare, submit, and administer both internal and external research grants with the aim to decrease autism comorbidities | FAC members are active participants in grant development. They participate in the biweekly workgroup teleconference. |
| Steering committee for ATN, AIR-P, and ALHN | To steer the network regarding clinical standards and research objectives. Members will be actively engaged in the key aspects and deliverables of the network and serve as a liaison to their respective sites. | FAC co-chairs are full steering committee members and are active in all steering committee responsibilities, calls, and meetings. Co-chairs also represent the FAC voices as a whole and ensure that parent perspectives are represented. |
AS, Autism Speaks.
One of the most recent network endeavors has been the creation and expansion of the Autism Learning Health Network (ALHN). The ALHN is 1 of many emerging active learning networks. This project is aimed at designing and implementing a sustainable network of patients, families, clinicians, and researchers who will work together to achieve optimal health and quality of life for individuals with ASD and their families. Families have been heavily involved in the planning and implementation of this project and were highly influential and instrumental in defining the 3 priority areas that the ALHN will focus on improving: irritability, anxiety, and attention-deficit/hyperactivity disorder. Since its inception, families have played a critical role in determining both the goals of the ALHN and the measures used to define success. Several family partners serve on the ALHN leadership team, and family partners played a key role in creating both the original and revised key driver diagram for this project. The network is dedicated to developing the next generation of family leaders to transform health care delivery by supporting the education and training of 2 FAC members in improvement science. FAC members enrolled in the year-long course work on projects directly tied to the overall aims and goals of the network.
The opportunity to participate as an equal partner in the design and implementation of the Autism Learning Health Network provides not only a vast opportunity to learn more about autism for my son and my family, but also offers a vehicle for us to give back to and lead families as they travel on their personal journeys with autism.
Amy Hess, parent and FAC co-chair
Local FAC
At a local level, the local FAC representatives at each site provide feedback and input to their site leadership regarding the current state of care, existing issues, concerns facing families in their community, and perspectives on new clinical initiatives. They encourage and facilitate the involvement of other parents and caregivers in their community to participate with their local site’s activities and initiatives while serving as stewards in community-based autism awareness events such as walks, workshops, and trainings. Disseminating information and awareness about the ATN is also a core responsibility of family partners at the local level.
Future Goals
Autism is a spectrum disorder, and a spectrum of patient and family voices is required to fully capture the unique health and life paths of those diagnosed. Moving forward, there are 4 future goals that the FAC would like to accomplish: access, onboarding, self-advocacy representation, and awareness.
Access
Reaching families in rural, remote, and underserved areas who may not have access to autism resources, services, and research is a priority for the FAC as well as the ATN, AIR-P, and ALHN. One way this is evolving is through ECHO Autism. This is an innovative way to bring technology and expertise together by using an interdisciplinary hub team through Web-based learning about all aspects of autism. Expanding ECHO as a resource to families after diagnosis, during transition, and in other important areas of need may be a critical way to provide outreach to underserved and isolated populations.
Onboarding
Onboarding FAC members with children of all ages across the autism spectrum is essential to providing a balanced, well-rounded family and caregiver perspective. More families of younger children with ASD are actively being recruited to ensure that the expanse of parent perspectives is captured across age groups. Long-standing, committed, seasoned family advisors, whose children are now growing into adolescence and adulthood, continue to support network activities and are instrumental in the onboarding and training of new parents to the group. The network is also working to engage families from diverse ethnic backgrounds and across languages spoken because it is critical to include these voices if research and care for children with autism is going to improve for all individuals.
Self-Advocacy Representation
The need for involvement of people living with autism to capture the individual’s perspective and corresponding needs for a full and productive life is critical to moving care and research forward. Through mentoring and recruitment of self-advocates to the FAC, the ATN, AIR-P, and ALHN plan to improve research, treatments, and outcomes in a more complete and creative way. The FAC proudly onboarded its first member who is an autism self-advocate in early 2018. This self-advocate, in conjunction with past FAC co-chairs, is working to develop processes for recruiting and supporting the inclusion of individuals with autism at every network site. The FAC is also expanding to be inclusive of siblings in the advisory capacity.
Awareness
Family advisors will continue to play a large role in the dissemination of information and resources designed to improve the lives of children and young adults with ASD. By helping to design, develop, and translate materials used to spread awareness and information to the autism community, family partners help further the dissemination goals of the network. Family advisors have been integral in the translation of network research into lay-friendly language that is digestible for a wider audience and have also worked to translate these research summaries into Spanish. By working with researchers to explain the real-world application of their study findings, family advisors help disseminate vital information that can be used to improve the health and well-being of other families with children on the spectrum.
Conclusions
Family advisors dedicate hundreds of hours annually to coproduce and disseminate information and best practices to families working to manage the changing dynamics of raising a child with autism and co-occurring conditions. These members dedicate their time while holding full-time jobs, raising children, and balancing the role of autism advocate with professionalism and steadfast commitment to the network. They are the parents and caregivers of young children to young adults, the siblings, and the self-advocates from multicultural, diverse backgrounds, and they represent a unique cross-section in autism that offers a comprehensive view of the issues and treatment needs across the life span. The value of these members to the network is immeasurable.
Family partners play a key role in the development of novel research, clinical care, and dissemination efforts generated by the ATN and AIR-P. They do this in parallel with their many family, parenting, work, and community commitments. By participating throughout all levels of the network and working closely with the network steering committee, the FAC ensures that the parent and family perspective is infused in all activities and output that the network generates.
Dr Eidson, Ms Hess, Mr Hess, and Ms Kelly are parents who are actively involved in the family advisory committee; and all authors conceptualized the manuscript topic and themes, drafted the initial manuscript, reviewed and revised the manuscript, drafted the contents in Table 1, and approved the final manuscript as submitted.
Current and past family advisory committee co-chairs on behalf of the network family advisory committee.
FUNDING: Supported by the Health Resources and Services Administration of the US Department of Health and Human Services under cooperative agreement UA3 MC11054 (Autism Intervention Research Network on Physical Health). The information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, the US Department of Health and Human Services, or the US Government. This work was conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health.
References
Competing Interests
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
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