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Autism Intervention Research Network on Physical Health (AIR-P Network)

Project profile

Institution: University of California, Los Angeles
Principal Investigator: Alice Kuo
Project Number: UT2MC39440
Project Date: 09-01-2020

Age Group(s)

  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • Low-income
  • Special Health Care Needs

Abstract

Autistic individuals have significantly lower average physical and mental health-related quality of life compared to other underserved and vulnerable groups. The proposed Research Network will support innovative life course intervention research that promotes optimal health and well-being of autistic individuals across the lifespan in seven key areas: health care services primary care/prevention well-being interventions health care transitions sexual health neurology and genetics.

Goals and objectives:

The proposed Research Network will establish and maintain an interdisciplinary multicenter research network for scientific collaboration and infrastructure to increase the life expectancy and quality of life for autistic individuals with a focus on underserved/vulnerable populations. Objectives include conducting ongoing needs assessments to identify the needs experiences and priorities of autistic individuals and their families and the current gaps in the research practice and policy spheres; designing a portfolio of multi-site intervention research studies translating research to policy and practice; implementing small grants funding to facilitate the research training and mentorship of diverse junior/new investigators in this field; and disseminating AIR-P findings.

Proposed activities and target populations:

The Network will advance intervention studies focused on autistic individuals across the lifespan; develop a centralized data repository for research in this area; incubate a small grants program; and create a process for research from proposals to publication with AUCD's network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities their families and communities.

Coordination:

The Research Network will consist of a Network Coordinating Center (NCC) based at UCLA as well as 15 Collaborating Research Entities/Sites (CREs) and seven Research Nodes with expertise in priority areas for autistic individuals. AUCD will serve a key role in managing the overall functioning of the Network and will serve as the data repository for the initiative. Research that will be supported within the Network will require review feedback and approval from a self-advocate and family review committee to ensure that all Network research directly benefits autistic individuals.

Products:

The proposed Research Network will produce an Annual supplement in Pediatrics as well as peer-reviewed publications webinars and conference presentations. We will also organize two AIR-P research days in conjunction with the AUCD and CARES conferences each year. Our new website will be an interactive repository to showcase our deliverables.

Evaluation:

We will use a combination of process and outcome measures to assess the Network and the effectiveness and efficiency in attaining all goals and objectives.

Publications

Roux, A. M., Shea, L. L., Steinberg, H., Rast, J. E., Anderson, K. A., Hotez, E., Rosenau, K., Kuo, A., Assing-Murray, E., & Shattuck, P. T. (2023). Evidence from the Autism Transitions Research Project (2017 2022): Capstone review and services research recommendations. Autism Research, 16(3), 480 496. https://doi.org/10.1002/aur.2890 DOI: https://doi.org/10.1002/aur.2890 January 2023

Rast, J.E., Fernandes, S.J., Schott, W. et al. Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults. J Autism Dev Disord (2023). Https://doi.org/10.1007/s10803-023-05911-0 DOI: Https://doi.org/10.1007/s10803-023-05911-0 February 2023

Carey ME, Tao S, Koffer Miller KH, et al. Association Between Medicaid Waivers and Medicaid Disenrollment Among Autistic Adolescents During the Transition to Adulthood. JAMA Netw Open. 2023;6(3):e232768. doi:10.1001/jamanetworkopen.2023.2768 DOI:doi:10.1001/jamanetworkopen.2023.2768 March 2023 JAMA

Brown HM, Dwyer PSR, Gassner DL, et al. The Autism Intervention Research Network on Physical Health Autistic Researcher Review Board. Pediatrics. 2022;149(Suppl 4):e2020049437F. doi:10.1542/peds.2020-049437F DOI:10.1542/peds.2020-049437F April 2022 35363294

Dwyer P, Ryan JG, Williams ZJ, Gassner DL. First Do No Harm: Suggestions Regarding Respectful Autism Language. Pediatrics. 2022;149(Suppl 4):e2020049437N. Doi:10.1542/peds.2020-049437N DOI:10.1542/peds.2020-049437N April 2022 35363298

Fernandes P, Kwak H. Autism and COVID-19. Pediatrics. 2022;149(Suppl 4):e2020049437O. doi:10.1542/peds.2020-049437O DOI:10.1542/peds.2020-049437O Apriill 2022 35363281

Fernandes P, Timmerman J, Hotez E, et al. A residency program curriculum to improve health care transitions for autistic individuals. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437u DOI:10.1542/peds.2020-049437U April 2022 35363293

Gragnani CM, Fernandes P. Promoting Healthy Lifestyles and Well-Being in Autistic Youth. Pediatrics. 2022;149(Suppl 4):e2020049437H. Doi:10.1542/peds.2020-049437H DOI:10.1542/peds.2020-049437H April 2022 35363282

Graham Holmes L, Ames JL, Massolo ML, Nunez DM, Croen LA. Improving the Sexual and Reproductive Health and Health Care of Autistic People. Pediatrics. 2022;149(Suppl 4):e2020049437J. Doi:10.1542/peds.2020-049437J DOI:10.1542/peds.2020-049437J April 2022 35363286

Graham Holmes L, Rast JE, Roux AM, Rothman EF. Reproductive Health and substance use education for autistic youth. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437t DOI:10.1542/peds.2020-049437T April 2022 35363291

Kuo AA, Hotez E, Rosenau KA, et al. The Autism Intervention Research Network on Physical Health (AIR-P) Charter. Pediatrics. 2022;149(Suppl 4):e2020049437C. Doi:10.1542/peds.2020-049437C DOI:10.1542/peds.2020-049437C April 2022 35363292

Kuo AA, Hotez E, Rosenau KA, et al. The Autism Intervention Research Network on physical health (AIR-P) research agenda. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437d DOI:10.1542/peds.2020-049437d April 2022 35363290

Kuo AA, Torrest A. Meeting the primary care needs of autistic individuals. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437g DOI:10.1542/peds.2020-049437G April 2022 35363296

Kuo AA. Promoting lifespan health and well-being through the Autism Intervention Research Network. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437b DOI:10.1542/peds.2020-049437B April 2022 35363279

Morgan EH, Rodgers R, Tschida J. Addressing the Intersectionality of Race and Disability to Improve Autism Care. Pediatrics. 2022;149(Suppl 4):e2020049437M. Doi:10.1542/peds.2020-049437M DOI:10.1542/peds.2020-049437M April 2022 35363297

Rast JE, Roux AM, Fernandes SJ, D'Silva V, Shea LL. Hospital Inpatient Stays for Autistic Youth and Youth With Other Disabilities. Pediatrics. 2022;149(Suppl 4):e2020049437R. Doi:10.1542/peds.2020-049437R DOI:10.1542/peds.2020-049437R April 2022 35363287

Rosenau KA, Hotez E. Promoting Interdisciplinary and Participatory Autism Research. Pediatrics. 2022;149(Suppl 4):e2020049437P. doi:10.1542/peds.2020-049437P DOI:10.1542/peds.2020-049437P April 2022 35363283

Roux AM, Rast JE, Shea LL. Family Perceptions of Health Care Access for Autistic Young Adults Receiving Disability Services. Pediatrics. 2022;149(Suppl 4):e2020049437S. Doi:10.1542/peds.2020-049437S DOI:10.1542/peds.2020-049437S April 2022 35363289

Schott W, Tao S, Shea L. Emergency Visits for Autistic Children and Children With ADHD. Pediatrics. 2022;149(Suppl 4):e2020049437V. Doi:10.1542/peds.2020-049437V DOI:10.1542/peds.2020-049437V April 2022 35363295

Shattuck P, Shea L. Improving care and service delivery for autistic youths transitioning to adulthood. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437i DOI:10.1542/peds.2020-049437I April 2022 35363288

Waisman TC, Alba LA, Green SA. Barriers to Inclusive Learning for Autistic Individuals. Pediatrics. 2022;149(Suppl 4):e2020049437Q. Doi:10.1542/peds.2020-049437Q DOI:10.1542/peds.2020-049437Q April 2022 35363285

Wilson RB. Improving Awareness, Identification, and Treatment of Motor Impairments in Autism. Pediatrics. 2022;149(Suppl 4):e2020049437K. Doi:10.1542/peds.2020-049437K DOI:10.1542/peds.2020-049437K April 2022 35363280

Shafqat I, Rosenau KA, Martinez-Agosto JA. The Role of Genetic Testing Among Autistic Individuals. Pediatrics. 2022;149(Suppl 4):e2020049437L. Doi:10.1542/peds.2020-049437L DOI:10.1542/peds.2020-049437L April 2022 35363284

Rast JE, Roux AM, Connor G, et al. The Medical Home and Mental Health Services in Children and Youth with Special Health Care Needs. Matern Child Health J. 2023;27(6):1097-1106. doi:10.1007/s10995-023-03652-1 DOI:doi:10.1007/s10995-023-03652-1 June 2023

Schott W, Tao S, Shea L. Prevalence of high-risk conditions for severe COVID-19 among Medicaid-enrolled children with autism and mental health diagnoses in the United States [published online ahead of print, 2023 Feb 17]. Autism. 2023;13623613231155265. doi:10.1177/13623613231155265 DOI: doi:10.1177/13623613231155265 February 2023

Natri H, Chapman C, Heraty S, Dwyer P, Walker N, Kapp S, Dron H, Martinez-Agosto J, Mikkola L & Doherty M. Ethical challenges in autism genomics. Recommendations for researchers. European Journal of Medical Genetics. Vol 66, Issue 9, 2023 DOI:https://doi.org/10.1016/j.ejmg.2023.104810 September 2023

Hotez E, Haley M, Martinez-Agosto J A, et al. (August 30, 2023) Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda. Cureus 15(8): e44388. DOI:10.7759/cureus.44388 August 2023

Hotez E, Rava J A, Shea L, et al. (June 28, 2023) Developing "Adulting for Health": Investigating the Health Needs of Neurodivergent Emerging Adults . Cureus 15(6): e41102. doi:10.7759/cureus.41102 DOI:doi:10.7759/cureus.41102 June 2023