Appendices

Appendix I: References

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79. Roux AM, Rast JE, Nye-Lengerman K, Purtle J, Lello A, Shattuck PT. Identifying Patterns of State Vocational Rehabilitation Performance in Serving Transition-Age Youth on the Autism Spectrum. Autism Adulthood. 2019 Jun 1;1(2):101-111. [PMID: 36601530]

Appendix II: Implementation of Recommendations/Objectives of the 2016-2017 IACC Strategic Plan

Table 28: 2016-2017 IACC Strategic Plan Questions and Recommendations/Objectives and federal departments and agencies that supported autism-specific research relevant to each Recommendation/Objective, based on data in the upcoming 2019-2020 IACC Portfolio Analysis Report.

Federal Autism-Specific Research Activities Involved in Implementation of Recommendations/Objectives of the 2016-2017 IACC Strategic Plan
Strategic Plan Question	Strategic Plan Recommendation/Objective	Departments/Agencies
Strategic Plan Question Question 1: How Can I Recognize the Signs of Autism, and Why Is Early Detection So Important? (Screening and Diagnosis)*	Strategic Plan Recommendation/Objective 1.1. Strengthen the evidence base for the benefits of early detection of autism.	Departments/Agencies HHS HRSA HHS NIH
	Strategic Plan Recommendation/Objective 1.2. Reduce disparities in early detection and access to services.	Departments/Agencies HHS HRSA HHS NIH
	Strategic Plan Recommendation/Objective 1.3. Improve/validate existing or develop new tools, methods, and service delivery models for detecting autism in order to facilitate timely linkage of individuals with autism to early, targeted interventions and supports.	Departments/Agencies HHS FDA HHS HRSA HHS NIH DoD DARPA ED NSF
Strategic Plan Question Question 2: What Is the Biology Underlying Autism? (Biology)	Strategic Plan Recommendation/Objective 2.1. Foster research to better understand the processes of early development, molecular and neurodevelopmental mechanisms, and brain circuitry that contribute to the structural and functional basis of autism.	Departments/Agencies HHS HRSA HHS NIH DoD-Army NSF
	Strategic Plan Recommendation/Objective 2.2. Support research to understand the underlying biology of co-occurring conditions in autism and to understand the relationship of these conditions to autism.	Departments/Agencies HHS HRSA HHS NIH DoD-Army NSF
	Strategic Plan Recommendation/Objective 2.3. Support large-scale longitudinal studies that can answer questions about the development of autism from pregnancy through adulthood and the natural history of autism across the lifespan.	Departments/Agencies HHS NIH
Strategic Plan Question Question 3: What Causes Autism, and Can the Disabling Aspects of Autism be Prevented or Preempted? (Genetic and Environmental Factors)	Strategic Plan Recommendation/Objective 3.1. Strengthen understanding of genetic factors for autism across the full diversity and heterogeneity of those with autism, enabling development of strategies for reducing disability and co-occurring conditions in autism.	Departments/Agencies HHS NIH
	Strategic Plan Recommendation/Objective 3.2. Understand the effects on autism of individual and multiple exposures in early development, enabling development of strategies for reducing disability and co-occurring conditions in autism.	Departments/Agencies HHS HRSA HHS NIH DoD-Army
	Strategic Plan Recommendation/Objective 3.3. Expand knowledge about how multiple environmental and genetic factors interact through specific biological mechanisms to manifest in autism phenotypes.	Departments/Agencies HHS CDC HHS NIH DoD-Army EPA
Strategic Plan Question Question 4: What Treatments and Interventions Will Help? (Interventions)	Strategic Plan Recommendation/Objective 4.1. Develop and improve pharmacological and medical interventions to address both core symptoms and co-occurring conditions in autism.	Departments/Agencies HHS AHRQ HHS HRSA HHS NIH DoD-Army NSF
	Strategic Plan Recommendation/Objective 4.2. Create and improve psychosocial, developmental, and naturalistic interventions for the core symptoms and co-occurring conditions in autism.	Departments/Agencies HHS HRSA HHS NIH DoD-Army ED NEA NSF
	Strategic Plan Recommendation/Objective 4.3. Maximize the potential for technologies and development of technology-based interventions to improve the lives of people on the autism spectrum.	Departments/Agencies HHS ACL HHS HRSA HHS NIH DoD-Army ED NSF
Strategic Plan Question Question 5: What Kind of Services and Supports Are Needed to Maximize Quality of Life for People on the Autism Spectrum? (Services and Supports)	Strategic Plan Recommendation/Objective 5.1. Scale up and implement evidence-based interventions in community settings.	Departments/Agencies HHS ACL HHS CDC HHS HRSA HHS NIH DoD-Army ED
	Strategic Plan Recommendation/Objective 5.2. Reduce disparities in access and in outcomes for underserved populations.	Departments/Agencies HHS ACL HHS HRSA HHS NIH ED
	Strategic Plan Recommendation/Objective 5.3. Improve service models to ensure consistency of care across many domains with the goal of maximizing outcomes and improving the value that individuals get from services.	Departments/Agencies HHS AHRQ HHS HRSA HHS NIH DoD-Army ED IMLS NSF
Strategic Plan Question Question 6: How Can We Meet the Needs of People with Autism as They Progress into and through Adulthood? (Lifespan)	Strategic Plan Recommendation/Objective 6.1. Support development and coordination of integrated services to help youth make a successful transition to adulthood and provide supports throughout the lifespan.	Departments/Agencies HHS ACL HHS HRSA HHS NIH DoD-Army ED NSF SSA
	Strategic Plan Recommendation/Objective 6.2. Support research and implement approaches to reduce disabling co-occurring physical and mental health conditions in adults with autism, with the goal of improving safety, reducing premature mortality, and enhancing quality of life.	Departments/Agencies HHS HRSA HHS NIH DoD-Army
	Strategic Plan Recommendation/Objective 6.3. Support research, services activities, and outreach efforts that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum into society.	Departments/Agencies HHS ACL HHS HRSA HHS NIH DoD-Army ED NSF SSA
Strategic Plan Question Question 7: How Do We Continue to Build, Expand, and Enhance the Infrastructure System to Meet the Needs of the Autism Community? (Infrastructure and Prevalence)	Strategic Plan Recommendation/Objective 7.1. Promote growth, integration, and coordination of the biorepository infrastructure.	Departments/Agencies HHS NIH
	Strategic Plan Recommendation/Objective 7.2. Develop, enhance, and link data repositories.	Departments/Agencies HHS HRSA HHS NIH
	Strategic Plan Recommendation/Objective 7.3. Expand and enhance the research and services workforce and accelerate the pipeline from research to practice.	Departments/Agencies HHS HRSA HHS NIH ED NSF
	Strategic Plan Recommendation/Objective 7.4. Strengthen autism surveillance to further understanding of the population of individuals with autism, while allowing comparisons and linkages across systems as much as possible.	Departments/Agencies HHS CDC
Strategic Plan Question Cross-Cutting Objectives/Recommendations	Strategic Plan Recommendation/Objective CC1. Support research to understand the underlying biology of sex differences in autism, possible factors that may be contributing to underdiagnosis, unique challenges that may be faced by girls/ women on the autism spectrum, and develop strategies for meeting the needs of this population.	Departments/Agencies HHS HRSA HHS NIH DoD-Army
	Strategic Plan Recommendation/Objective CC2.** Support diversity, equity, inclusion, and accessibility efforts in research, services, and policy that reduce disparities and increase equity for underrepresented, underserved, and intersectional populations within the autism community and enhance opportunities for autistic people.	Departments/Agencies HHS ACL HHS HRSA HHS NIH DoD-Army ED NSF

Note that some agencies may be conducting additional broader disability research projects that are related to Recommendations/Objectives in the IACC Strategic Plan.

Appendix V contains a list of all acronyms in the report, including acronyms of federal departments and agencies.

* Though CDC research on ASD prevalence is relevant to Question 1 (Screening & Diagnosis) Recommendations/Objectives, these research projects are most relevant to and categorized under Question 7 (Infrastructure and Prevalence).

** CC2, the Cross-Cutting Recommendation on DEIA, was created for and added to the new 2021-2023 IACC Strategic Plan. While this recommendation did not exist in this form in the 2016-2017 IACC Strategic Plan, the IACC has been tracking autism research in this area since 2017 (see 2017-2018 IACC Portfolio Analysis Report).

Appendix III: Federal Disability-Related Resources

The following webpages include links to resources provided by the federal government relevant to individuals with autism and other disabilities.

• Benefits.gov Overview of Disability Resources
• Department of State Promoting the Rights of Persons with Disabilities Fact Sheet
• FCC Disability Rights Office
• HHS Programs for People with Disabilities
• IACC Autism Resources
• NCD Resources
• U.S. General Services Administration Resources for Americans with Disabilities
• USA.gov Disability Services

Appendix IV: HRSA-Supported ASD Research Studies and Tools

Table 29: AIR-P Studies.

Year Initiated*	Study Title	Description	Status
Year Initiated* 2008	Study Title Autism Treatment Network (ATN) Registry	Description The AIR-P, through the ATN data registry, has made comprehensive data about children with ASD available to a broader research community.	Status Ongoing
Year Initiated* 2015	Study Title Physical Exercise to Reduce Anxiety in Underserved Children with ASD	Description Study to examine the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families.	Status Ongoing
Year Initiated* 2015	Study Title Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with ASD	Description Study to improve home dental hygiene, oral health, and compliance with dental procedures in underserved populations with ASD by comparing the efficacy of the AIR-P Dental Toolkit with a combined regimen involving the toolkit and a parent-mediated behavioral intervention.	Status Completed 8/31/2018
Year Initiated* 2018	Study Title Resiliency Program for Siblings of Children with Autism Spectrum Disorder	Description Pilot study to improve resiliency in teenage siblings of children with autism spectrum disorder.	Status Ongoing
Year Initiated* 2018	Study Title Registry Call-Back Assessment: Secondary Analyses	Description These secondary analyses arise from various young investigator interests in mining existing ASD Registry data. Topics include parental stress, exercise, oral health, and core autism symptoms.	Status Completed 8/31/2018
Year Initiated* 2019	Study Title Ameliorate Childhood Obesity Risk from Newer Antipsychotics for Individuals with Autism Spectrum Disorder	Description Pilot study adapted an empirically validated pediatric weight management program for youth with ASD who gain weight on second-generation antipsychotics.	Status Completed 8/31/2020
Year Initiated* 2019	Study Title Evaluation of a Multimedia Sleep Education Package in Children with ASD	Description Pilot study to explore whether a multimedia sleep education package can be successfully provided to families and show efficacy in improving sleep habits and sleep problems along with parenting sense of competence.	Status Completed 8/31/2020
Year Initiated* 2019	Study Title The Emotion Awareness and Skills Enhancement Program for Youth with ASD and Intellectual Disability (EASE-ID): A Mind-Body Intervention to Improve Sleep, Health, and Emotion Regulation	Description Pilot study to extend the benefits of a previously developed mindfulness-based intervention (Emotion Awareness and Skills Enhancement Program) to youth with ASD and intellectual disability and evaluate its impact on sleep and overall physical health.	Status Completed 8/31/2020
Year Initiated* 2020	Study Title Health Services and Systems Node: Health Research, Practice, and Policy Needs Assessments and Research Studies	Description Study to develop clear metrics and foster connections among researchers and policymakers to improve care coordination and service delivery on population-level life course outcomes for autistic individuals. Specific research priorities include supporting health care navigation and models of transition practices, training primary care providers in the adult health system, and educating individuals and families about transition care.	Status New
Year Initiated* 2020	Study Title State Implementation of Health Risk Screening Tools	Description The overarching aim is to examine health outcomes and patterns of access to subsequent recommended care among children with autism in states that have implemented a health risk screening tool compared to states that a) do not have a health risk screening tool, and b) states that utilize other approaches to screening for health risks.	Status New
Year Initiated* 2020	Study Title Social Network Linkages to Grow Autism Physical Health Research	Description Study aiming to improve life outcomes for individuals with autism spectrum disorder through social network research. This study investigates how to strengthen employment outcomes for young adults on the spectrum in extended high school.	Status Completed 8/31/2021
Year Initiated* 2020	Study Title State Implementation of Health Risk Screening Tools	Description This study examines health outcomes and patterns of access to subsequent recommended care among children with autism in states that have implemented a health risk screening tool compared to states that a) do not have a health risk screening tool, and b) states that utilize other approaches to screening for health risks.	Status Ongoing
Year Initiated* 2020	Study Title Measuring sexual and reproductive health service use and outcomes for transition-age youth with ASD	Description This project addresses critical research gaps impeding the development and dissemination of targeted sexual and reproductive health services for transition age youth with autism. The study will elicit stakeholder input to create a comprehensive framework of key constructs to guide future research and policy advocacy and will use this framework to develop and pilot an open source sexual and reproductive health instrument designed for population-based research to serve transition age youth with autism.	Status Completed 7/1/2021
Year Initiated* 2021	Study Title Barriers to Obstetric/ Gynecological Health Care among Women with Autism Spectrum Disorder (ASD)	Description This study examines of factors associated with gynecological health care use/access and gynecological conditions in autistic people compared with people with other developmental disabilities.	Status New
Year Initiated* 2021	Study Title Dance for Children with Autism	Description Study examines the effects of the Expressive Movement Initiative Dance program on physical health, behavior, motor skills, and quality of life outcomes in autistic individuals. The study also investigates effects of health and well-being on caregivers of autistic individuals.	Status New
Year Initiated* 2021	Study Title Health and Well-Being at the Transition to Adulthood among Individuals with Disabilities: An Analysis of the Panel Study of Income Dynamics	Description This study aims to longitudinally describe "flourishing," or positive mental health, as well as self-reported overall health trajectories among transition age young adults with intellectual and developmental disabilities and physical and chronic conditions disabilities over a ten-year period utilizing national data.	Status New
Year Initiated* 2021	Study Title Increasing Access to Autism- Specific Care in Primary Care: Diagnosis and Access to Treatment This project will evaluate the impact of primary care provider (PCP) participation in the ECHO Autism Washington telementoring program on PCP capacity for diagnosing and making service recommendations for pediatric patients with ASD in Washington State.	Description This project will evaluate the impact of primary care provider (PCP) participation in the ECHO Autism Washington telementoring program on PCP capacity for diagnosing and making service recommendations for pediatric patients with ASD in Washington State.	Status New
Year Initiated* 2021	Study Title Evaluating a Remote Developmental Assessment for Latinx Infants and Toddlers at High Likelihood for Developing Autism	Description This pilot study has two aims: (1) To evaluate the acceptability, feasibility, and validity of a remote developmental assessment (PANDA-Box) for Latinx infants and toddlers identified at high likelihood for developing autism based on community screenings; and (2) To explore the extent to which acceptability, feasibility, and validity vary among families identified from community screening compared to families with an older child with autism.	Status New
Year Initiated* 2021	Study Title Patient, Parent, and Provider Partnerships in Healthcare Transition: A New Program for Youth with Autism Spectrum Disorders	Description The goal of this proposed project is to collaborate with autistic youth and caregivers of autistic youth to design a clinical health care transition program.	Status New
Year Initiated* 2021	Study Title The Birds and Bees: A pilot study of a parent-mediated sexuality education program for preteens and teens on the Autism Spectrum	Description This study will refine and finalize a national survey of autistic adults to increase our knowledge regarding education and support they identify as most effective and important to them in building their confidence to pursue interpersonal and/or sexual relationships and sexual health.	Status New
Year Initiated* 2021	Study Title Health equity promotion for sexual and gender minorities (SGM) on the autism spectrum	Description This project will describe population characteristics of autistic sexual and gender minorities (SGM) (age, race, co-occurring intellectual disability), and examine medical and psychiatric conditions and service utilization among autistic SGM ages 12-65+ compared to autistic cisgender heterosexuals. The immediate goal is to fill knowledge gaps, with the ultimate goal of providing a foundation for partnering with stakeholders to develop scalable interventions that promote health equity.	Status New
Year Initiated* 2021	Study Title Specialty Neurodevelopmental Care for Adults with Autism Spectrum Disorder – What Works?	Description This study is based in a new consultation clinic for adults with ASD and other developmental disabilities and will 1) Characterize the patient population seen in the new clinic; 2) Elucidate patient, family, and caregiver priorities and barriers; 3) Assess the patient/caregiver-perceived value of the new Adult Developmental Disabilities clinic; and 4) Determine priorities for future research and practice innovations.	Status New
Year Initiated* 2021	Study Title Informing the Design of Culturally Relevant Transition Programing for Racial/Ethnic Minority and Linguistically Diverse Young People and Their Families	Description This study will examine and identify a variety of socio-ecological factors, such as cultural beliefs and the physical/social environment, across diverse racial/ethnic, linguistic, and economic populations, that influence how families of young people with Autism and/or Intellectual Developmental Disabilities utilize resources during the transition period from youth to adulthood. The study will include a series of interviews with racial/ethnic and linguistically diverse youth-parent dyads.	Status New
Year Initiated* 2021	Study Title Exploring the Mental Health Care Experiences of Autistic LGBTQ+ Youth: A Community-participatory Study	Description This study employs qualitative, p henomenological methods to examine the lived experiences of autistic LGBTQ+ identifying youth with regard to their mental health and mental health care access. This study utilizes a community-based participatory framework to collaborate with autistic LGBTQ+ individuals as co-researchers.	Status New
Year Initiated* 2021	Study Title Community-Based Self- Determination Intervention to Enhance Goal Setting and Attainment: Targeting Employment, Postsecondary Education, Community Participation, and Physical Health Outcomes	Description This study pilots the use of the Self- Determined Learning Model of Instruction (SDLMI) as a community-based lifestyle intervention to promote self-determination and other valued outcomes in autistic adolescents. Specific goals include exploring the impact of the SDLMI-Autism in community settings on self-determination, executive processes, and health and functional outcomes.	Status New
Year Initiated* 2021	Study Title Healthcare Transition for Adolescents and Young Adults (AYA) with Autism in Primary Care Setting	Description The project will enhance our understanding of barriers and facilitators of health care transition for rural autistic adolescents and young adults (AYAs) from multiple sources (e.g., autistic AYAs, family members, primary care providers). The research findings will inform the development of new interventions or adaptation of existing interventions that are applicable and feasible in rural communities, with an end goal of improving the physical and overall health of autistic AYAs.	Status New
Year Initiated* 2021	Study Title ASXL and motor function	Description The goal of this study is to improve our understanding of the co-occurring neuro-logical and neurodevelopmental conditions and manifestations of ASXL1-3 conditions. The data will improve clinical knowledge in screening, referral and diagnosis to primary care providers, neurologists, and geneticists.	Status New
Year Initiated* 2021	Study Title Cohort Discovery for Genetic Predisposition to Conditions	Description The purpose of this project is to use large datasets such as the Data Discovery Repository at UCLA to identify cohorts for pilot studies, as well as integrate genomic discovery with the Atlas Biobank.	Status New
Year Initiated* 2021	Study Title First-person construct validation of flourishing measures for health surveillance of autistic youth	Description This study aims to answer the research question: Are the questions and measures being used in national surveys to evaluate friendships, sharing ideas in schools, and related behaviors culturally relevant or meaningful to autistic youth?	Status New
Year Initiated* 2021	Study Title Identifying the Constructs for an Autistic Quality of Life (AQoL) Measure	Description The primary objective of this project is to identify the components of Autistic Quality of Life (AQoL) according to autistic adults. The study will interview autistic adults about AQoL and the impact of AQoL on physical health.	Status New
Year Initiated* 2021	Study Title Genetic Access for Individuals with Neurodevelopmental Conditions (GAIN)	Description This study examines barriers that exist when referring patients to genetics services. The responses to this survey will be used to design an intervention with the goal of increasing access to genetic testing and counseling.	Status New
Year Initiated* 2022	Study Title Mapping My Health: A Community Mapping Intervention to Enhance the Self-Determination and Physical Health and Well-Being of Autistic Adolescents	Description Mapping My Health is a novel intervention that combines a community mapping approach, Mapping Assets for Postschool Success, and an evidence-based self-determination intervention, the SDLMI to enhance the physical health and wellbeing of autistic adolescents who identify as female.	Status New
Year Initiated* 2022	Study Title Recommendations for Improving Gastrointestinal Health among Autistic Adults: A Mixed-Methods Community-Based Participatory Study	Description This study will examine the lived experiences, needs, and priorities of autistic adults with gastrointestinal symptoms. Findings will be used to develop recommendations for potential services, interventions, tools, or policies to improve gastrointestinal health.	Status New

* From 2008-2020, the AIR-P awardee was Massachusetts General Hospital. In September 2020, the AIR-P awardee changed to University of California, Los Angeles. All activities initiated prior to 2020 are attributed to AIR-P Massachusetts General Hospital; all activities initiated in 2020 and beyond are attributed to AIR-P University of California, Los Angeles.

Table 30: AIR-P Tools and Guidelines.

Tool/Guideline Name	Description
Tool/Guideline Name EEG Guide for Parents	Description Parents and providers may have concerns or questions about how to help children with ASD successfully complete an EEG. Two toolkits (one for parents and one for providers) were developed to provide information about the EEG procedure, how a child's ASD diagnosis might affect his or her experience, and how to help children with ASD successfully prepare for and complete an EEG.
Tool/Guideline Name EEG Guide for Providers	Description Parents and providers may have concerns or questions about how to help children with ASD successfully complete an EEG. Two toolkits (one for parents and one for providers) were developed to provide information about the EEG procedure, how a child's ASD diagnosis might impact his or her experience, and how to help children with ASD successfully prepare for and complete an EEG.
Tool/Guideline Name Puberty and Adolescence	Description All parents eventually face the challenge of teaching their children about the natural changes of puberty. However, parents of preteens with ASD may need the help of additional strategies to ease the transition. This tool provides guidance on the subject of puberty that can be directly applied to preteens with ASD. The tool aims to increase families' understanding of puberty and their ability to adapt to these changes with confidence.
Tool/Guideline Name Melatonin and Sleep Problems: A Guide for Parents	Description Melatonin is a common medicine a doctor or health care provider may suggest to help improve sleep. This toolkit provides parents with information about melatonin and helps parents decide if melatonin is right for their child.
Tool/Guideline Name Guide on Treatment of Anxiety	Description The combined AIR-P/ATN network developed systematic ways to assess and treat coexisting conditions such as ASD and anxiety. This guideline provides methods for managing this and other coexisting conditions for which management was previously highly variable or sporadic. This guidance is intended for parent and professional communities.
Tool/Guideline Name Guide on the Treatment of Irritability and Problem Behaviors	Description The combined AIR-P/ATN network developed systematic ways to assess and treat irritability and problem behaviors when they coexist with ASD. This guideline provides methods for managing this and other coexisting conditions for which management was previously highly variable or sporadic. This guidance is intended for parent and professional communities.
Tool/Guideline Name Bedtime Routines	Description The combined AIR-P/ATN network produced a short accessible video on bedtime routines. Network parents, clinicians and researchers used materials developed by combined network, including the tool kit "Strategies to Improve Sleep" and up to date research to inform this video.
Tool/Guideline Name Daytime Habits	Description The combined AIR-P/ATN network produced a short accessible video on daytime habits that may impact a child’s sleep. Network parents, clinicians and researchers used materials developed by combined network, including the tool kit "Strategies to Improve Sleep" and up to date research to inform this video.
Tool/Guideline Name First-Then Boards for Children with Autism Spectrum Disorder	Description The combined AIR-P/ATN network produced a short accessible video on first-then boards, a visual aid that helps identify the direct consequences of an action, such as a reward for good behavior. Network parents, clinicians and researchers used materials developed by combined network, including the tool kit "Visual Supports" and up to date research to inform this video.
Tool/Guideline Name Visual Schedule for Children with Autism Spectrum Disorder	Description The combined AIR-P/ATN network produced a short accessible video on visual schedules, which are often used to help children with autism better transition to a new activity. Network parents, clinicians and researchers used materials developed by combined network, including the tool kit "Visual Supports" and up to date research to inform this video.
Tool/Guideline Name "Adulting" Modules and Data Collection Instruments	Description Pilot-tested a range of "adulting" modules and data collection instruments on physical and mental health, health care, relationships, financial well-being, civic engagement, and other important developmental topics for young adults with >100 University of California, Los Angeles students.
Tool/Guideline Name University of California, Los Angeles Needle Anxiety Protocol	Description The University of California, Los Angeles needle anxiety protocol uses QI principles to recognize and implement strategies that health care providers can use to treat autistic patients and their families and improve overall performance.
Tool/Guideline Name Identifying Risks, Strengths, and Protective Factors for Children and Families: Resource for Clinicians Conducting Developmental Surveillance	Description This resource offers suggested supports and strategies to identify risks, strengths, and protective factors for pediatric clinicians via the developmental surveillance process. Pediatric clinicians can use suggested questions during health supervision visits and may also use this resource to support pediatric trainees or other educational efforts related to developmental surveillance.
Tool/Guideline Name SDLMI-Autism with Facilitator’s Guide Tip Sheet	Description This includes an interactive design to develop the materials, supporting future research using the SDLMI-Autism in community-based settings to promote self-determination and other valued outcomes in autistic adolescents.

Table 31: AIR-B Studies.

Year Initiated*	Study Title	Description	Status
Year Initiated* 2015	Study Title Mind the Gap	Description This multi-phase study aims to address the critical need to increase access to care for under-resourced children with ASD/ developmental disabilities and their families by conducting several focus groups and interviews with parents of low-income, minority children with ASD/developmental disabilities across different sites (University of California, Los Angeles; University of California, Davis; University of Pennsylvania; and University of Rochester) to better understand challenges, barriers, and needs in the community.	Status Completed 8/31/2020
Year Initiated* 2015	Study Title Building Better Bridges	Description This multi-phase study aims to identify the barriers to successful transitions between educational systems for children with ASD/ developmental disabilities by conducting focus groups and interviews with parents of children with ASD/developmental disabilities across different sites (University of California, Los Angeles; University of California, Davis; University of Pennsylvania; and University of Rochester) to identify transition barriers. The findings informed an intervention to improve transition outcomes for children with ASD/ developmental disabilities and their families.	Status Completed 8/31/2020
Year Initiated* 2017	Study Title PARTNER	Description The PARTNER study aims to measure and monitor change among AIR-B community partners. Findings have informed AIR-B on how to improve collaborations and maximize resource sharing among AIR-B community partners to strengthen community care systems for underserved children with ASD/ developmental disabilities and their families.	Status Completed 8/31/2020
Year Initiated* 2020*	Study Title Implementation Strategy Intervention for Remaking Recess	Description Remaking Recess (RR) is a school-based social/peer engagement intervention for children ages 5-12. RR combines both peer-mediated (employing typically developing peers to support children with ASD/developmental disabilities) and adult-facilitated (employing school personnel to facilitate social engagement for children with ASD/developmental disabilities) approaches to increase children’s social skills.	Status Ongoing
Year Initiated* 2020*	Study Title Implementation Strategy Intervention for SDLMI	Description The SDLMI is a self-advocacy intervention for adolescents with intellectual and develop-mental disabilities (13-22 years; 22 is the upper age limit of high school for individuals with disabilities). The SDLMI intervention enables the facilitator to teach students to self-direct the goal setting and attainment process to achieve educationally relevant goals and enhance self-determination.	Status Ongoing
Year Initiated* 2020*	Study Title Implementation Strategy Intervention for Mind the Gap	Description Mind the Gap (MTG) is a family navigation intervention for children newly diagnosed under age 8 to engage under-resourced families in accessing intervention services after an ASD/developmental disability diagnosis.	Status Ongoing
Year Initiated* 2021	Study Title Analyses using Los Angeles Unified School District data	Description The purpose of this research study is to understand how urban schools currently assist students with autism spectrum disorders, including what works well and what can be improved when school staff work with these students. The study uses archived data from the Los Angeles Unified School District to examine the special education services for students with autism in under-resourced, diverse school settings and to collaboratively determine evidence-based practices to test in schools.	Status New
Year Initiated* 2021	Study Title Secondary data analyses using data from college students, Cooperative Institutional Research Program	Description This study is analyzing the characteristics of autistic people who go to college in a nationally representative sample, and how they fare in college over time. The study looks at characteristics (who they are, where they go to school, their majors, etc.) and how they are affected by mental health issues (anxiety depression, etc.), as well as discrimination and harassment, sexual victimization, and school belonging.	Status New
Year Initiated* 2021	Study Title PARTNER Study: Measuring the impact of AIR-B collaborations-- Using social network analysis to improve community care systems for underserved children with ASD and their families	Description The overall research aim for this project is to use social network analysis to measure the impact of AIR-B engagement on the interagency collaboration of AIR-B community partners. Specifically, the project is measuring interagency collaborations related to autism support for underserved children with ASD.	Status New

* Note: For all AIR-B studies that initiated in 2020, the implementation strategy UNITED will be incorporated and will involve team building and sustainment via social networking. UNITED will be used to test how best to implement RR, SDLMI, and MTG in the community. This implementation strategy intervention will help identify and train the best members of each organization or school to implement RR, SDLMI, and MTG at that site. Intervention sites include University of California, Los Angeles; University of California, Davis; University of Pennsylvania; University of Rochester; University of Kansas; University of Washington; and Drexel University.

Table 32: AIR-P Tools

Tool Name	Description
Tool Name Mind the Gap Parent Resource Binder (available in English and Spanish)	Description This toolkit provides parents with resources that will guide them throughout the process of acquiring services for their newly diagnosed children. This binder includes topics such as: what is ASD, navigating the system, parent rights and child advocacy, understanding challenging behavior, communication development, dealing with stigma, from anxiety to acceptance, your social network, healthy lifestyle, and basic needs.
Tool Name Building Better Bridges Transition Passport	Description This tool supports parents with children undergoing a school transition, which contains a transition checklist, parent and student guide, a brief overview of the student, and resources tailored to meet the needs of the parent/caregiver and educational team members.
Tool Name Social Dynamics of Intervention	Description This tool measures change for the Building Better Bridges school transition intervention through social network mapping of the levels of communication and cooperation between all members of the child’s transition team.
Tool Name PARTNER	Description This tool consists of surveys to measure the impact of engagement on the interagency collaboration of community partners.
Tool Name Transition Back to School Resource Handbooks (available in English, Spanish, and Korean)	Description To help guide students transitioning back to school during the COVID-19 pandemic, AIR-B developed a handbook for parents and teachers in English, Spanish and Korean. Webinars on how to use the handbook are available in all three languages.
Tool Name Community Conference (recordings available in English, Spanish, and Korean)	Description In collaboration with community partners, AIR-B organizes an annual community conference in English, Spanish and Korean. Conference themes have focused on self-determination, the intersection of race/ethnicity and disability, helpful strategies parents/teachers/self-advocates used in distance learning throughout the COVID-19 pandemic, as well as school diversity and inclusion in ASD.

Table 33: DBPNET Studies.

Year Initiated	Study Title	Description	Status
Year Initiated 2013	Study Title Maternal Immune Status and Autism Severity	Description This study proposes to replicate the presence of maternal autoantibodies in mothers of children with ASD in a geographically diverse population (Pennsylvania and Arkansas) utilizing the DBPNet and determine the association of these antibodies with autism severity and behavioral impairments.	Status Ongoing
Year Initiated 2014	Study Title Project EARLY: Engagement, Assessment, Referral, and Linkage for Young Children	Description The goal of the project is to provide real-world primary care practices with a replicable model of care that increases early identification and access to timely diagnostic and early intervention services for a vulnerable population of urban families.	Status Ongoing
Year Initiated 2014	Study Title Preliminary Validation of Selected Pediatric PROMIS® Measures in Children with Autism Spectrum Disorder: A DBPNet Study	Description The purpose of this project is to determine the validity of the PROMIS® pediatric parent-proxy reported Peer Relationships, Family Involvement, and Psychological Distress measures in 5–12-year-old children with ASD and elucidate how appropriately parents believe the PROMIS measures assess the constructs of peer relationships, family involvement, and psychological distress in their 5–12-year-old children with ASD.	Status Completed 8/31/2021
Year Initiated 2017	Study Title Online Parenting Training in Pivotal Response Treatment: Increasing Access to Care.	Description The purpose of this pilot project is to assess the initial acceptability/feasibility of the online training program and collect the necessary pilot data in order to submit a multi-site R01 grant across DBPNet sites.	Status Ongoing
Year Initiated 2018	Study Title Diagnosis of Psychological Distress and Anxiety among Children with Intellectual Disability and Autism by Clinicians in Developmental- Behavioral Pediatrics, Child Psychiatry and Psychology: A Qualitative study	Description The purpose of this study is to understand how clinicians in the fields of Developmental- Behavioral Pediatrics, Child Psychiatry, and Psychology diagnose and manage psychological distress and anxiety among children with ASD and Intellectual Disability through qualitative analyses including focus groups and individual interviews.	Status Ongoing
Year Initiated 2018	Study Title The Role of the Autism Diagnostic Observation Schedule in the Diagnosis of Autism by a Developmental-Behavioral Pediatrician: A DBPNet Study	Description The goals of this study are to determine the frequency with which the results of an ADOS-2 alter the diagnostic conclusions of DBPs evaluating a child aged 18 months to 5 years, 11 months for possible ASD; and to evaluate factors that are associated with the likelihood that the results of an ADOS-2 will alter DBPs’ clinical diagnosis of ASD.	Status Ongoing
Year Initiated 2018	Study Title A Retrospective Description of the Effectiveness and Adverse Effects of Stimulants and Alpha-2 Agonists (A2A) Used by Developmental-Behavioral Pediatricians for the Treatment of ADHD in Preschool Aged Children	Description The primary objective of this study is to determine the percentage of preschool aged children with ADHD who responded positively to stimulants and alpha-2 agonists (A2A) based on a review of data in the HER and to determine if there is a difference in the positive response rate to these two classes of medication. The secondary objectives are to describe type and frequency of adverse effects to stimulants and A2A when prescribed for the treatment of preschool age children for ADHD.	Status Ongoing
Year Initiated 2019	Study Title Understanding the Management of ADHD by Members of the Society for Developmental and Behavioral Pediatrics	Description The objective of this study is to describe the current practices of professionals in the Society of Developmental Behavioral Pediatrics regarding the assessment and management of ADHD in general, and complex ADHD in particular. A secondary objective is to identify if there are demographic factors (e.g., practice location, clinician years in practice, clinician frequency of ADHD care, etc.) that impact practice patterns.	Status Ongoing
Year Initiated 2019	Study Title Improving Rates of Behavioral Treatment in Preschoolers through MEHealth for ADHD Software	Description The primary aims of this study is to collect pilot data for an on-line behavioral parent training intervention for preschool age children with ADHD	Status Completed 8/31/2022
Year Initiated 2020	Study Title Improving Access and Outcomes for Children with ADHD	Description The primary aim of this study is to collect pilot data for an on-line behavioral parent training intervention delivered by community-based paraprofessionals for children with ADHD	Status Ongoing
Year Initiated 2020	Study Title Medication Treatment of ADHD in Children with ASD and Intellectual Disability	Description This is a secondary data analysis of data for the EHR study evaluation medication treatment of ADHD in children with ASD.	Status Ongoing
Year Initiated 2021	Study Title Improving Parent Initiation of Behavioral Parent Training Using Approaches Informed by Behavioral Economics	Description Evaluate the main effect of behavioral economic strategies to promote engagement within a factorial design, hypothesizing that strategies will enhance engagement, as measured by initial enrollment in a behavioral parent training intervention.	Status Ongoing
Year Initiated 2022	Study Title SAFE Initiative	Description Supporting Access for Everyone (SAFE) is an interprofessional and stakeholder-driven initiative to establish best practices for supporting youth with neurodevelopmental disabilities in medical settings.	Status Ongoing

Table 34: DBPNET Tools and Guidelines

Tool/Guideline Name	Description
Tool/Guideline Name ADHD Guideline	Description The DBPNet research director led the development of the complex ADHD guidelines published by the Society for Developmental and Behavioral Pediatrics.

Table 35: HWRN Studies.

Year Initiated	Study Title	Description	Status
Year Initiated 2017	Study Title Trajectory of BMI in Children with ASD – a Follow-up to a Feeding Intervention	Description The goal of this project is to follow-up with participants from a randomized controlled (wait-list) trial on parent training for feeding, in which 42 parents of children with ASD aged 2 to 7 learned behavioral strategies to increase their child’s acceptance of new foods, improve their child’s behavior during meals, and teach self-help skills related to meals. BMI, behavioral difficulties associated with meals, family practices around meals, parent stress, and 3-day food records were assessed at 3 time points. The goal is to use these data to elucidate risk factors for obesity that are specific for children with ASD.	Status Completed 6/30/2019
Year Initiated 2017	Study Title Supporting Preschool Teachers to Promote Physically Active Plan Among Children with ASD and Developmental Disabilities	Description The goal of this study is to develop and to provide preliminary evidence that supports an online professional development program for preschool teachers who work with children with ASD/developmental disabilities that is free of charge and can be accessed at any time, in any location, thus building the capacity of childcare settings to appropriately promote sufficient daily physical activity, and ultimately healthy weight, among this population.	Status Completed 6/30/2019
Year Initiated 2017	Study Title Does Food Addiction Mediate the Relationship between BMI and ASD?	Description This study seeks to identify possible psychological mechanisms underpinning overeating and its links to increased BMI in children with ASD. The rationale for the proposed research is that identifying psychological mechanisms underlying overeating in ASD will allow examination of neural underpinnings of these behaviors and provide treatment targets, both of which can be explored in subsequent applications for grant funding.	Status Completed 6/30/2019
Year Initiated 2018	Study Title The Validity of Image-Assisted Food Records in Adolescents with Intellectual/Developmental Disabilities	Description The goal of this project is to assess the feasibility of conducting an energy intake validation study in adolescents with intellectual/developmental disabilities, and to evaluate the agreement and compare mean daily energy intake obtained from image-assisted 3-day food records with mean daily energy expenditure in 20 adolescents with intellectual/developmental disabilities.	Status Completed 6/30/2019
Year Initiated 2018	Study Title Engaging Children With Behavioral Health And Neuro-developmental Disorders And Their Parents To Prevent Summer Weight Gain: Piloting The Game Squad Home Exergaming and Virtual Health Coaching Intervention	Description This project was funded through supplemental funding awarded to the HWRN by MCHB. It piloted a physical activity and healthy lifestyle intervention for youth with neurobehavioral and behavioral health disorders through the use of exergaming (X-Box technology) and virtual coaching.	Status Completed 6/30/2019
Year Initiated 2021	Study Title GamerFit: A digital intervention to improve physical activity and sleep behaviors in youth with ASD and psychiatric diagnoses.	Description This study evaluates the effectiveness of GamerFit, a digital intervention that aims to improve physical activity and sleep behaviors in youth with ASD and psychiatric diagnoses. This project adapts and tests a remote exergaming intervention with telehealth coaching for youth with autism aged 10-15. The 12-week intervention includes a progressive exergaming schedule, Fitbit step-tracking, and weekly health coaching.	Status Ongoing

Table 36: HWRN Tools and Guidelines

Tool/Guideline Name	Description
Tool/Guideline Name "Let’s Go" Toolkits by Maine Medical Center and HWRN	Description These toolkits support professionals who work with children with intellectual disabilities and developmental disabilities. The objective of these toolkits is to provide resources for creating opportunities for all children to lead healthy lives. The toolkits aim to increase healthy eating and physical activity and decrease the risk of obesity among children with these disabilities.
Tool/Guideline Name Video Sports Illustrated for Children with Disabilities	Description This interactive tool shows a video of children with disabilities playing baseball, soccer, swimming, track and field, basketball, and Wii-sports. Children who watch the video have the opportunity to describe their level of enthusiasm for each sport. At the end, they list their two favorite sports. Because the tool is visual rather than verbal, it is most appropriate for children with disabilities who have communication difficulties.
Tool/Guideline Name Assessing Community Satisfaction with Community Based Participatory Research	Description This survey assesses the satisfaction of HWRN Advisory Board members and conference participants with their level of engagement in projects about children and families with disabilities.
Tool/Guideline Name Measure of Adaptive Behaviors Surrounding Eating	Description This tool is used by clinicians and researchers to assess adolescents’ abilities to engage in behaviors such as assisting with meal preparation and feeding themselves. The questions in this tool respond to a lack of appropriate existing measures to assess engagement in adaptive behaviors surrounding eating. When fully developed, this new adaptive eating behaviors measure will provide a useful tool for researchers and clinicians interested in assessing adaptive behaviors surrounding eating.
Tool/Guideline Name Strategies to Optimize Healthy Eating on a Low Budget	Description This tool was developed for people on a limited food budget to assist in buying and preparing healthy food. Because many people with disabilities have modest incomes, the tool provided information on how they and their families can navigate this difficult subject.
Tool/Guideline Name Expert Panel Recommendations on Obesity Management by Primary Care Providers for Children with ASD	Description The expert panel prepared the first set of recommendations on obesity management in children with ASD for dissemination to the public. This will be published in the journal Pediatrics.
Tool/Guideline Name Nutrition Education Workshops for Adults with Disabilities	Description This manualized series of 11 workshops is a 6-month interactive curriculum for people with developmental disabilities and their care providers. Its development was supported in part by a 2014 grant from the National Institutes of Health.
Tool/Guideline Name Positive Health Practices Curriculum for Adults with Developmental Disabilities	Description This manualized intervention—available in paper and web-based formats— promotes healthy eating and physical activity for adults with disabilities. Its development was sponsored in part in 2015 by the Pennsylvania Office of Developmental Programs’ Department of Public Welfare.
Tool/Guideline Name A Novel Weight Loss Tool for Adolescents with Intellectual Disabilities	Description This tool was developed from an R01 randomized controlled weight loss trial for overweight/obese adolescents with intellectual disability. It was published in the Journal of the Academy of Nutrition and Dietetics.
Tool/Guideline Name GamerFit Health	Description Web-based app that delivers exergaming, sleep, and telehealth counseling to neurodiverse youth and those with mental health challenges.

Table 37: ALDP Studies.

Year Initiated	Study Title	Description	Status
Year Initiated 2017	Study Title Early Life Origins of ASD: Role of Maternal and Cord Blood Metabolome, Placental Histology and Fetal Growth Trajectory	Description ALDP leverages the Boston Birth Cohort to accomplish the following aims: Aim 1. Examine the role of maternal and cord blood metabolomes in ASD; Aim 2. Examine placental histological findings in relation to the risk of ASD; Aim 3. Examine in utero fetal growth patterns in relation to the risk of ASD; Aim 4. Integrate multi-dimensional data to develop early prediction models and test interventions; and Aim 5. Provide leadership in education, training, and dissemination.	Status Ongoing
Year Initiated 2017	Study Title Opioid Crisis	Description These studies aim to examine the long-term impact of maternal opioids use during pregnancy on child health outcomes during critical developmental stages (fetal, early childhood, and school age).	Status Ongoing
Year Initiated 2017	Study Title US Maternal and Childhood Obesity Epidemics	Description These studies aim to examine the inter-generational impact of environmental obesogen exposure by examining maternal blood lead levels during pregnancy and maternal folate levels on her child’s long-term risk of overweight or obesity (from birth up to 15 years of age).	Status Ongoing
Year Initiated 2017	Study Title Rising Rate of Attention Deficit Hyperactivity Disorder (ADHD) in US Children	Description These studies aim to examine the association of maternal and fetal blood biomarkers of acetaminophen (Tylenol) and its metabolites with child risk of ADHD.	Status Ongoing
Year Initiated 2019	Study Title ALDP Ancillary Study 1	Description Response to US opioid crisis: A prospective birth cohort study to examine the long-term impact of maternal opioid use during pregnancy on child health outcomes.	Status Completed 8/31/2020
Year Initiated 2019	Study Title ALDP Ancillary Study 2	Description Response to US maternal and childhood obesity epidemics: A prospective birth cohort study to examine the inter-generational impact of maternal prenatal environmental obesogen exposure (lead, mercury) on her child’s long-term risk of overweight or obesity from birth up to 15 years of age.	Status Completed 8/31/2020
Year Initiated 2019	Study Title ALDP Ancillary Study 3	Description Response to rising rate of ADHD in US children: A prospective birth cohort study to examine the association of maternal and fetal blood biomarkers of acetaminophen (Tylenol) and its metabolites with child risk of ADHD.	Status Completed 8/31/2020
Year Initiated 2020	Study Title A Prospective Birth Cohort Study on Cord Blood Folate Sub-Types and Risk of Autism Spectrum Disorder	Description This is the first study to show that folate sub-types have differential effect on ASD risk.	Status Completed 8/31/2021
Year Initiated 2020	Study Title The Association between Atopic Diseases and Neurodevelopmental Disabilities in a Longitudinal Cohort	Description In recognition of many comorbidities associated with ASD, this study focuses on a less studied co-morbidity: allergic diseases in ASD.	Status Completed 8/31/2021
Year Initiated 2020	Study Title The Impact of the COVID-19 Pandemic on Clinical Visits among High-Risk Minority Children: Findings from the Boston Birth Cohort	Description This is the first prospective study to examine the impact of the COVID-19 pandemic on clinical encounters among high-risk minority children, including children with ASD.	Status New
Year Initiated 2020	Study Title The Impact of the COVID-19 Pandemic on Clinical Visits among High-Risk Minority Mothers: Findings from the Boston Birth Cohort	Description This is the first longitudinal study to evaluate the impact of COVID-19 pandemic on clinical encounters in understudied US minority mothers, including those with children of ASD.	Status Completed 8/31/2021
Year Initiated 2020	Study Title Interaction Between Maternal Immune Activation and Antibiotic Use during Pregnancy and Child Risk of Autism Spectrum Disorder	Description This prospective study lent further support for the role of immune activation in the development of ASD.	Status Completed 8/31/2021
Year Initiated 2020	Study Title Association between cord blood metabolites in tryptophan pathway and childhood risk of autism spectrum disorder and attention-deficit hyperactivity disorder.	Description This prospective study suggests that cord blood metabolites in the tryptophan pathway is associated with childhood risk of autism.	Status Completed 8/31/2021
Year Initiated 2021	Study Title Individual and Combined Association Between Prenatal Polysubstance Exposure and Childhood Risk of Attention Deficit Hyperactivity Disorder.	Description This is the first prospective study to examine the impact of maternal polysubstance use on childhood risk of ADHD.	Status Completed 8/31/2022
Year Initiated 2021	Study Title Developmental Disorders in Children Born to Women with Sickle Cell Disease: A Report From The Boston Birth Cohort.	Description This is the first longitudinal study to evaluate the impact of maternal sickle cell disease on child's neurodevelopment.	Status Completed 8/31/2022
Year Initiated 2021	Study Title Association of Mitochondrial DNA Content, Heteroplasmies and Inter-generational Transmission with Autism: Findings from two independent U.S. samples.	Description This is the first prospective birth cohort study to link maternal and newborn mitochondrial DNA contents and variants to child risk of autism.	Status Completed 8/31/2022

Table 38: ALDP Tools

Tool Name

Description

Tool/Guideline Name ASD Early Prediction Algorithm

Description Although ASD is typically diagnosed after age 2, the root causes of ASD and the underlying biomarkers may be traced back long before clinical manifestations of ASD. The ASD early prediction algorithm raises the prospect that if high-risk children can be identified at an earlier stage, then intensive intervention can be considered to prevent or at least improve their health outcomes associated with a future ASD diagnosis.

Table 39: ATRP Studies.

Year Initiated	Study Title	Description	Status
Year Initiated 2017	Study Title Factors Associated with Healthy Life Outcomes and Access to Needed Services among Transition Age Youth	Description Secondary data analysis is used to examine the factors associated with healthy life outcomes and access to needed services among transition age youth with ASD. Data sources include the Social Security Administration and VR administrative data; national surveys; and various state-level data sources. Aims are to describe changes over time in the size, demographics, health, and disability characteristics (i.e., needs), access to services and related life outcomes, and to describe the distribution and correlates of access to services and related life outcomes.	Status Completed 8/31/2022
Year Initiated 2017	Study Title Service Network Coordination and Social Capital	Description This project applies a mixed methods approach to adapt a method to measure transition age youth and adolescents (TAYA) social capital and the coordination of intervention team members. The aims are to adapt a measure of social capital for the postsecondary transition, and to pilot test the adapted social capital measure with TAYA with ASD, their parents and transition coordinators before and after leaving high school.	Status Completed 8/31/2022
Year Initiated 2017	Study Title Transition Odyssey	Description The project will develop and pilot test a scalable interview protocol to understand TAYA, family and provider insights about the transition process, the genesis of disparities and factors that influence outcomes. The aims are to understand the unique transition-related service access experiences of TAYA, and to understand participant perspectives about what constitutes healthy life outcomes.	Status Completed 8/31/2022
Year Initiated 2022	Study Title Community and System Factors Impacting Healthy Life Outcomes and Service Access Among Transition-Age Youth	Description This population-level research study will help to understand (a) distributions of service needs and outcomes across subgroups of autistic TAYA, and (b) factors that help or hinder positive outcomes. We will quantify and describe disparities in health and its determinants with a renewed focus on inter-sectionality and identify key determinants that are associated with profiles of vulnerability and differences in impact across subgroups.	Status New
Year Initiated 2022	Study Title Experiences of Transition-Age Latinx Autistic Youth: Under-standing and addressing health and access to care disparities	Description This study will develop a culturally informed, community-driven intervention to help Latinx autistic youth learn essential skills for successful transition. The intervention will be based on a proposed set of formative studies illuminating how to support Latinx autistic TAYA to access health and well-being. The study will collect qualitative and quantitative information about what works during the transition to adulthood, for which persons, and under what circumstances, to enhance the health and wellbeing of these youth and their families.	Status New
Year Initiated 2022	Study Title Capacity Building for Equity Impact: Promoting healthy life outcomes and equity for autistic postsecondary students	Description This study seeks to address the lack of research regarding BIPOC autistic postsecondary students, which has critical implications for equity in higher education. The team will conduct a multi-stakeholder study with higher education faculty, administrators, and BIPOC autistic students in community colleges and minority-serving institutions in the United States.	Status New
Year Initiated 2022	Study Title Capacity Building for Equity Impact: Conduct a study of Title V programs to identify points of leverage for building capacity to serve autistic TAYA and their families	Description This study seeks to address the lack of research examining the role of Title V MCH Block Grant programs in serving autistic youth as a category of children and youth with special health care needs. The study will explore the use of Title V programs to better coordinate the transition to adulthood for these youth.	Status New

Table 40: ATRP Tools.

Tool Name	Description
Tool/Guideline Name National Autism Indicators Reports	Description The National Autism Indicators Report (NAIR) series presents research findings and raises awareness about the unique service needs of TAYA with ASD to inform policies and programs with the best available evidence. NAIR topics have included: transition into young adulthood; VR; developmental disability services and outcomes in adulthood; high school students on the autism spectrum; children on the autism spectrum and family financial hardship; health and health care; and family perspectives on services and supports; Medicaid; mental health; intersection of autism, health, poverty, and racial inequality.
Tool/Guideline Name Measurement Protocols for TAYA with ASD	Description The two qualitative pilot studies, "Service Network Coordination and Social Capital" and "Transition Odyssey" are developing measurement protocols including youth, parent, and provider interviews and network protocols, that can be used in future public health and services research on autism and transition. The first adapts an existing approach to measuring the social context of service provision and care coordination using innovative methods from social network analysis. The second adapts and integrates methods from two existing studies to develop a feasible, reliable, and valid approach to obtaining the perspectives of diverse TAYA and their caregivers.

Table 41: ATRP Studies.

Year Initiated	Study Title	Description	Status
Year Initiated 2017	Study Title Facing Your Fears in School Settings: Implementing a Cognitive Behavioral Therapy Program for Students with ASD or Other Special Learning Needs	Description This study aims to test a cognitive behavior therapy program for youth with ASD in school settings. Children with ASD are at high risk for developing clinically significant anxiety, which markedly interferes with peer relationships, family functioning and participation in academic programming.	Status Completed 8/30/2020
Year Initiated 2017	Study Title Expanding pathways to early screening and intervention for underserved toddlers with ASD (ASD-PATH)	Description This study aims to increase pathways of access to early detection and intervention for toddlers from Hispanic and low-income families in King County, Washington, by building community capacity for providing specialized screening, intervention, and family-centered care within the context of existing, accessible federally supported programs.	Status Completed 8/31/2021
Year Initiated 2021	Study Title Telehealth Rapid Intervention for Externalizing Behaviors in ASD	Description This study is a randomized controlled trial to examine the efficacy of time-limited, telehealth delivery of parent-child interaction therapy (PCIT) compared with Treatment as Usual for children ages 2-6 with ASD and disruptive behavior problems from low socioeconomic backgrounds. The study aims to determine the feasibility, acceptability, and engagement outcomes of telehealth-PCIT, as well as its efficacy in improving child behavioral outcomes and parenting outcomes.	Status Ongoing
Year Initiated 2021	Study Title Bridging barriers to intervention access for waitlisted children with ASD and their families	Description This study aims to address health disparities through a robust investigation of a telehealth-enabled early diagnostic and intervention package for children with ASD who are waitlisted for diagnostic evaluation or intervention services.	Status Ongoing

Table 42: Autism SDAR Studies

Year Initiated	Study Title	Description	Status
Year Initiated 2019	Study Title Understanding the impact of disparity in special education services for underrepresented groups with ASD	Description This study aims to characterize youth-level sociodemographic disparities in special education for under-resourced youth with ASD and sequentially to understand the impact of these disparities into young adulthood.	Status Completed 8/31/2021
Year Initiated 2019	Study Title Characterizing the Health and Healthcare Utilization of Girls with Autism Spectrum Disorder in Florida	Description This study aims to address the gap in under-standing the health care experiences of girls with ASD by using the OneFlorida Data Trust, a repository of Florida statewide EHR data and Medicaid administrative records, which includes health data for 74% of all Floridians.	Status Completed 8/31/2020
Year Initiated 2019	Study Title Race and Ethnic Discrepancies in Developmental Surveillance and Early Intervention	Description This study aims to determine whether racial/ ethnic discrepancies in the conjoint receipt of developmental screening and monitoring exist, and if differences in developmental surveillance receipt predict racial/ethnic discrepancies of identified ASD in children under the age of three.	Status Completed 8/31/2021
Year Initiated 2019	Study Title Effects of Augmentative and Alternative Communication (AAC) Interventions on Speech Production for Individuals with Autism Spectrum Disorders and Other Developmental Disabilities: a Systematic Review and Meta-analysis	Description This study aims to synthesize the intervention literature on the effects of AAC intervention on natural speech production in individuals with ASD and other developmental disabilities.	Status Completed 8/31/2021
Year Initiated 2020	Study Title The Intersection of Public Health Insurance and Community Connectedness for Kids with ASD/Intellectual and Developmental Disabilities and Their Family Caregivers: A Nationally Representative Study	Description This study aims to understand the experiences of children and family caregivers that use public health insurance programs, and how these experiences differ for those with different levels of connectedness to their communities. Specific outcomes of interest include behavioral health and school participation of children, overall health of children and family caregivers, and economic engagement of family caregivers. The study will use 2014- 2017 pooled NHIS and link child, parent, and family data.	Status Completed 5/31/2022
Year Initiated 2020	Study Title Disparities in Health Care Access and Utilization of Children during Autism Insurance Reform	Description Research on factors contributing to access and utilization disparities in the US pediatric population during autism insurance reform has been sparse. This study intends to fill this gap through two specific aims: 1) identify the determinants that contribute to disparities in health care access and utilization among children with ASD by early and late policy adopting states, and 2) investigate potential changes in hospitalization patterns for children with ASD, prior to and following comprehensive ASD insurance reform.	Status Ongoing
Year Initiated 2020	Study Title An Ecological Approach to Understanding Obesity Risk among Children with ASD	Description The study uses the social-ecological framework to understand obesity risk in children with ASD. The prevalence of ASD and childhood obesity are increasing, and children with ASD are at an increased risk of obesity compared to typically developing children. As obesity in children with ASD may increase with age, there is a need to explore factors in adolescents with ASD as they transition to adult health care.	Status Completed 2/28/2022
Year Initiated 2021	Study Title The Impact of Medical Home on the Early Identification and Intervention Receipt	Description This project will determine whether having a medical home is associated with earlier identified ASD/developmental disabilities, and whether early identified children with ASD/DD have increased odds of receiving EI and community treatment compared to children with ASD/developmental disabilities without a medical home.	Status New
Year Initiated 2021	Study Title Oral health conditions, dental visits and dental care utilization among developmentally disabled adolescents with obesity	Description The study examines the oral health conditions, dental visits, and preventive dental care utilization of a high-risk subgroup-ASD/ oppositional defiant disorder (ODD) adolescents with obesity using a nationally representative sample. The study will help understand the differences in adolescent, family, and community level risk factors among ASD/ODD adolescents with obesity, thus informing potential interventions to reduce disparities in oral health status among this group.	Status New
Year Initiated 2021	Study Title Effect of demographics, impairment severity, and COVID-19 on the treatment patterns of children with ASD: A SPARK dataset study	Description This study examines the patterns of therapeutic services received (e.g., behavioral/ developmental, speech, occupational/ physical, and other alternative/complementary approaches) before and during the pandemic. The study also looks at the effects of demographic criteria as well as impairment severity on the pattern of therapeutic services provided to children with ASD.	Status New
Year Initiated 2021	Study Title Racial Disparities in Hospitalization due to Ambulatory Care Sensitive Conditions among U.S. Children with Autism	Description The study examines the racial/ethnic trends in the prevalence of hospitalization for ambulatory care sensitive conditions among children with ASD and investigates variations in acute and chronic ambulatory care sensitive conditions-related hospital stays for children with ASD, by considering race, income strata and geographical region in combination.	Status New
Year Initiated 2021	Study Title Understanding Gender Dysphoria among Adolescents with ASD	Description This study examines associations between ASD, gender dysphoria, and mental health comorbidities among U.S. populations of youth aged 9-18 using data from PEDSnet, a large database that includes comprehensive health information for over six million U.S. youth from eight children’s hospital networks.	Status New

Appendix V: List of Acronyms

A2A: alpha-2 agonists

AAC: augmentative and alternative communication

ABA: applied behavior analysis

ABC-CT: Autism Biomarkers Consortium for Clinical Trials

ACA: Affordable Care Act

ACC: Autism Coordinating Committee

ACD: Autism Care Demonstration

ACE: Autism Centers of Excellence

ACE Report: America’s Children and the Environment Report

ACF: Administration for Children and Families

ACL: Administration for Community Living

ACoR: Autism Comorbid Risk Score

ADA: Americans with Disabilities Act

ADDM Network: Autism and Developmental Disabilities Monitoring Network

ADHD : attention-deficit/hyperactivity disorder

ADOS: Autism Diagnostic Observation Schedule

AFIRM: Autism Focused Intervention Resources and Modules

AHRQ: Agency for Healthcare Research and Quality

AI: artificial intelligence

AIR Networks: Autism Intervention Research Networks

AIR-B: Autism Intervention Research Network on Behavioral Health

AIR-P: Autism Intervention Research Network on Physical Health

ALDP: Autism Longitudinal Data Project

AoD: Administration on Disabilities

AQoL: Autistic Quality of Life

ARD: Autism Research Database

ARDRAW: Analyzing Relationships between Disability, Rehabilitation and Work

ARP: Autism Research Program

ASD: autism spectrum disorder

ASPE: Office of the Assistant Secretary for Planning and Evaluation

ASPIRE: Advancing State Policy Integration for Recovery and Employment

ASPR: Administration for Strategic Preparedness & Response

ATN: Autism Treatment Network

ATRP: Autism Transitions Research Project

ATTRI: Accessible Transportation Technologies Research Initiative

AUCD: Association of University Centers on Disability

Autism CARES Act: Autism Collaboration, Accountability, Research, Education, and Support Act

Autism FIRST: Autism Field-Initiated Research Studies

Autism SDAR: Autism Secondary Data Analysis Research

Autism SIIP: Autism Single Investigator Innovation Programs

AWARE: Advancing Wellness and Resiliency in Education

AYA: adolescents and young adults

BHDAP: Office of Behavioral Health, Disability, and Aging Policy

BIPOC: Black, Indigenous, People of Color

BJA: Bureau of Justice Assistance

BMI: body mass index

BQP: Biomarker Qualification Program

BSP: behavior support plan

BTIA: Behavior Therapy for Irritability and Aggression

CAA: Combating Autism Act of 2006

CAP: Collections And Programming

CAPE-Youth : Center for Advancing Policy on Employment for Youth

CARA: Combating Autism Reauthorization Act of 2011

CARES Act: Coronavirus Aid, Relief, and Economic Security Act

CBT: cognitive behavioral therapy

CBT-CI: cognitive behavioral treatment for childhood insomnia

CCAM: Coordinating Council on Access and Mobility

CDC: Centers for Disease Control and Prevention

CDER: Center for Drug Evaluation and Research

CDMRP: Congressionally Directed Medical Research Program

CDRH: Center for Devices and Radiological Health

CHIP: Children's Health Insurance Program

CHR-P: Clinical High Risk for Psychosis

CIL: Center for Independent Living

CMHI: Children's Mental Health Initiative

CMS: Centers for Medicare & Medicaid Services

COVID-19: coronavirus disease 2019

CPIR: Center for Parent Information and Resources

CPRC: Community Parent Resource Center

CRIT: Crisis Response and Intervention Training

CSBI: comprehensive school-based intervention

CSESA: Center on Secondary Education for Students with Autism Spectrum Disorders

CYSHCN: children and youth with special health care needs

CYvYC: Center for Youth Voice, Youth Choice

DAC: FCC Disability Advisory Committee

DARPA: Defense Advanced Research Projects Agency

DBP: developmental-behavioral pediatrics/ pediatrician

DBPNet: Developmental Behavioral Pediatrics Research Network

DEIA: diversity, equity, inclusion, and accessibility

DHA: Defense Health Agency

DINOSAUR: DINO Strategies for Anxiety and Intolerance of Uncertainty Reduction

DoD: Department of Defense

DOJ: Department of Justice

DOL: Department of Labor

DOT: Department of Transportation

DRDC: Disability Rights District of Columbia

DRKY: Disability Rights Kentucky

DRNM: Disability Rights New Mexico

DRS: Disability Rights Section

DSM-5-TR: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision

EARN: Employer Assistance and Resource Network on Disability Inclusion

EASE-ID: Emotion Awareness and Skills Enhancement Program for Youth with ASD and Intellectual Disability

EBPRC: Evidence-Based Practices Resource Center

EBSA: Employee Benefits Security Administration

ECHO: Extended Care Health Option

ECLS-K: 2011: Early Childhood Longitudinal Study, Kindergarten Class of 2010-11

ECLS-K: 2024: Early Childhood Longitudinal Study, Kindergarten Class of 2023-24

ED: Department of Education

EDI: equity, diversity, and inclusion

EEG: electroencephalogram/electroencephalography

EHB: essential health benefit

EHR: electronic health record

EI: early intervention

EPA: Environmental Protection Agency

EPSDT: Early and Periodic Screening, Diagnostic, and Treatment

ERISA: Employee Retirement Income Security Act

ESDM: Early Start Denver Model

FACES: Family and Childhood Experiences

FASDs: fetal alcohol spectrum disorders

FC-CC: family-centered care coordination

FCAC: RAISE Family Caregiving Advisory Council

FCC: Federal Communications Commission

FDA: Food and Drug Administration

FEMA: Federal Emergency Management Agency

FERPA: Family Educational Rights and Privacy Act

FHIP: Fair Housing Initiatives Program

FIC: Fogarty International Center

FIWA: Federal Interagency Workgroup on Autism

fMRI: functional magnetic resonance imaging

FPT: Federal Partners in Transition

FTA: Federal Transit Administration

FXS: fragile X syndrome

FY: fiscal year

GABA: γ-aminobutyric acid

GAIN: Genetic Access for Individuals with Neurodevelopmental Conditions

GAINS: Gather, Assess, Integrate, Network, and Stimulate

GIS: Geographic Information System

GNETS: Georgia Network for Educational and Therapeutic Supports

GO4IT: Global Outcomes for Infants and Toddlers

GPS: Global Positioning System

HCBS: home- and community-based services

HCT: health care transition

HHS: U.S. Department of Health and Human Services

HIPAA: Health Insurance Portability and Accountability Act of 1996

HRSA: Health Resources and Services Administration

HS&B: 22: High School and Beyond Longitudinal Study of 2022

HSLS: 9: High School Longitudinal Study of 2009

HUD: Department of Housing and Urban Development

HWRN: Healthy Weight Research Network for Children with ASD and Developmental Disabilities

IACC: Interagency Autism Coordinating Committee

ICAP: Interventional Cooperative Agreement Program

ICDR: Interagency Committee for Disability Research

ICfL: Idaho Commission for Libraries

ICOs: Institutes, Centers, and Offices

ICP: Indian Children’s Program

IDEA: Individuals with Disabilities Education Act

IEP: Individualized Education Plan

IES: Institute of Education Sciences

IFSP: Individualized Family Service Plan

IHS: Indian Health Service

ILS: Independent Living Services

IMLS: Institute of Museum and Library Services

INCLUDE: INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE

IPE: Individualized Plan for Employment

ISMICC: Interdepartmental Serious Mental Illness Coordinating Committee

JAN: Job Accommodation Network

JMHCP: Justice and Mental Health Collaboration Program

LAUNCH: Linking Actions for Unmet Needs in Children’s Health

LEAD Center: National Center on Leadership for the Employment and Economic Advancement of People with Disabilities

LEND: Leadership Education in Neurodevelopmental and Other Related Disabilities

LGBTQIA+: Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, and Asexual

LSTA: Library Services and Technology Act

LTSS: long-term services and supports

M-CHAT: Modified Checklist for Autism in Toddlers

MCH: maternal and child health

MDD Council: Missouri Developmental Disabilities Council

MEPS: Medical Expenditure Panel Survey

MFP: Money Follows the Person

MGLS: 2017: Middle Grades Longitudinal Study

MHBG: Community Mental Health Services Block Grant

MHPAEA: Mental Health Parity and Addiction Equity Act

MHS: Military Health System

MHTTC: Mental Health Technology Transfer Center

MTG: Mind the Gap

NAC: National Autism Coordinator

NACCD: National Advisory Committee on Children and Disasters

NACCHO: National Association of County and City Health Officials

NACIDD: National Advisory Committee on Individuals with Disabilities and Disasters

NADTC: National Aging and Disability Transportation Center

NAIR: National Autism Indicators Report

NASA: National Aeronautics and Space Administration

NCATS: National Center for Advancing Translational Sciences

NCBDDD: National Centers on Birth Defects and Developmental Disabilities

NCCIH: National Center for Complementary and Integrative Health

NCD: National Council on Disability

NCEE: National Center for Education Evaluation and Regional Assistance

NCER: National Center for Education Research

NCES: National Center for Education Statistics

NCHS: National Center for Health Statistics

NCI: National Cancer Institute

NCMM: National Center for Mobility Management

NCRR: National Center for Research Resources

NCSER: National Center for Special Education Research

NCTSN: National Child Traumatic Stress Network

NEA: National Endowment for the Arts

NED: non-elderly adults with disabilities

NEI: National Eye Institute

NHGRI: National Human Genome Research Institute

NHIS: National Health Interview Survey

NHLBI: National Heart, Lung, and Blood Institute

NIA: National Institute on Aging

NIAAA: National Institute on Alcohol Abuse and Alcoholism

NIAID: National Institute of Allergy and Infectious Diseases

NIAMS: National Institute of Arthritis and Musculoskeletal and Skin Diseases

NIBIB: National Institute of Biomedical Imaging and Bioengineering

NICHD: Eunice Kennedy Shriver National Institute of Child Health and Human Development

NIDA: National Institute on Drug Abuse

NIDCD: National Institute on Deafness and Other Communication Disorders

NIDCR: National Institute of Dental and Craniofacial Research

NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research

NIEHS: National Institute of Environmental Health Sciences

NIGMS: National Institute of General Medical Sciences

NIH: National Institutes of Health

NIMH: National Institute of Mental Health

NIMHD: National Institute on Minority Health and Health Disparities

NINDS: National Institute of Neurological Disorders and Stroke

NLM: National Library of Medicine

NSCH: National Survey of Children's Health

NSF: National Science Foundation

OASIS: Online and Applied Systems Intervention Skills

OBHE: Office of Behavioral Health Equity

OD: Office of the Director

ODD: oppositional defiant disorder

ODEP: Office of Disability Employment Policy

OHS: Office of Head Start

OJP: Office of Justice Programs

OPRE: Office of Planning, Research, and Evaluation

OSEP: Office of Special Education Programs

OSERS: Office of Special Education and Rehabilitative Services

P&A: Protection and Advocacy System

PAI: Physics of Artificial Intelligence

PAIMI: Protection & Advocacy for Individuals with Mental Illness

PATH: Projects for Assistance in Transition from Homelessness

PCIT: parent-child interaction therapy

PCP: primary care provider

PCPID: President’s Committee for People with Intellectual Disabilities

PEAT: Partnership on Employment & Accessible Technology

PED: Public Education Department

PEERS: Program for the Education and Enrichment of Relational Skills

PEHSU: Pediatric Environmental Health Specialty Unit

PHA: public housing authority

PIA: Partnership on Inclusive Apprenticeship

PNS: Projects of National Significance

PROMISE: Promoting Readiness of Minors in SSI

PTI: Parent Training and Information Center

PY: program year

R&D: Research and Development

RAISE: Recognize, Assist, Include, Support, and Engage

RCDC: Research, Condition, and Disease Categories

RDRC: Retirement and Disability Research Consortium

RePORT: Research Portfolio Online Reporting Tools

REYAAS: Research Support Services for Employment of Young Adults on the Autism Spectrum

RFC: residual functional capacity

RFI: Request for Information

RR: Remaking Recess

SA: Rehabilitation Services Administration

RT: Regulating Together

RTAP: Rural Transit Assistance Program

SAFE: Supporting Access for Everyone

SAMHSA: Substance Abuse and Mental Health Services Administration

SAR-TAC: Self-Advocacy Resource and Technical Assistance Center

SBIR: Small Business Innovation Research

SCDD: State Council on Developmental Disabilities

SciAct: Science Activation

SDLMI: Self-Determined Learning Model of Instruction

SED: serious emotional disturbance

SEED (CDC): Study to Explore Early Development

SEED (DOL): State Exchange on Employment & Disability

SGM: sexual and gender minorities

SLAA: State Library Administrative Agency

SLP: speech-language pathologist

SMI: serious mental illness

SPA: state plan amendment

SPF-Rx: Strategic Prevention Framework for Prescription Drugs

SPIRIT: Stakeholder-Partnered Implementation Research and Innovation Translation

SSA: Social Security Administration

SSDI: Social Security Disability Insurance

SSI: Supplemental Security Income

STEM: science, technology, engineering, and mathematics

STEP-UP: Secondary Transition to Employment Program – USGS Partnership

STEPS: Stepped Transition in Education Program for Students with ASD

SUBG: Substance Use Prevention, Treatment, and Recovery Services Block Grant

SUD: substance use disorder

T-STEP: TEACCH School Transition to Employment and Postsecondary Education Program

TAYA: transition age youth and adolescents

TBHCE: Telebehavioral Health Center of Excellence

TEACCH: Treatment and Education of Autistic and Related Communication Handicapped Children

TSC: tuberous sclerosis

U.S.: United States

U.S.C.: U.S. Code

UCEDD: University Center for Excellence in Developmental Disabilities Education, Research, and Services

UNITED: Using Novel Implementation Tools for Evidence-based Intervention Delivery

USAID: U.S. Agency for International Development

USGS: U.S. Geological Survey

USPSTF: U.S. Preventive Services Task Force

VA: Department of Veterans Affairs

vlPFC: ventrolateral prefrontal cortex

VR: vocational rehabilitation

WIC: Special Supplemental Nutrition Program for Women, Infants, and Children

WIOA: Workforce Innovation and Opportunity Act

WLG: Welcoming Libraries Grant

WRP: Workforce Recruitment Program

YSHCN: youth with special health care needs

Prepared by the
National Autism Coordinator
National Institute of Mental Health
National Institutes of Health

On Behalf of the
Office of the Secretary
U.S. Department of Health and Human Services

December 2023

Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
National Autism Coordinator, National Institute of Mental Health, National Institutes of Health (on behalf of the Office of the Secretary), U.S. Department of Health and Human Services. Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities, under the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2019 (FY 2019 – FY 2023). December 2023. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/report-to-congress/2023/.