AIR-P (UCLA): PROGRESS TO DATE

04/28/2021


The Autism Intervention Research Network on Physical Health (AIR-P) is a multi-disciplinary, multi-site network that supports innovative life course intervention research and promotes optimal health and well-being of autistic individuals across the lifespan. In September 2020, the University of California, Los Angeles (UCLA) was awarded funding by the Maternal and Child Health Bureau in the Health Resources and Services Administration to lead and develop the network with the primary goal of increasing the life expectancy and quality of life for autistic individuals. 

In just a few months, we have worked with collaborating organizations to establish a steering committee, a self-advocate review board, and a database committee. The database committee is providing input on the creation of an AIR-P Infrastructure for Collaborative Research (ICR) for creating scalable, sustainable research across the Network; promoting research and training opportunities for early investigators; and disseminating research findings widely. 

Our network, in collaboration with AUCD, has also released informational monthly webinars with over 500 attendees total. The AIR-P Principal Investigator, Dr. Alice Kuo, presented at February's webinar on the COVID vaccine and a needle anxiety initiative developed at UCLA. Needle anxiety, or trypanophobia, is common and occurs in about 10% of all patients, and may be more prevalent in autistic individuals and others with intellectual and/or developmental disabilities who have sensory sensitivities. Needle anxiety can preclude patients from receiving the COVID vaccine and other important medical procedures. Our needle anxiety protocol, developed by medical and psychological professionals, aims to reduce or eliminate trypanophobia as a barrier to the autistic community to receiving adequate healthcare. View the recording here! 

Here are some additional accomplishments since receiving our funding in September: 

  • Formation of the Autistic Researcher Review Board (ARRB), a self-advocate team that works extensively with AIR-P leadership to advise on our network activities and events are in alignment with the needs and goals of autistic individuals and their families 
  • Four webinars launched through AUCD and scheduled through October 2021 
  • Two intervention studies started by our network node leaders, Dr. Rujuta Bhatt (Neurology) and Drs. Candace Gragnani and Priyanka Fernandes (Community-based Lifestyle Interventions) 
    • Neurology - Dance for children with neurodevelopment disorders: a therapeutic intervention to improve motor ability, perceived physical competence, and self-efficacy: Expressive movement initiative to study the benefits of dance to autistic individuals and individuals with other developmental disabilities in areas of quality of life, perceived efficacy, social communication, adaptive function, and hope. 
    • Community-based Lifestyle Interventions - The Impacts of COVID-19 on Children and Families with Developmental Disabilities: Household study aiming to 1) understand the service and health burden among families and children with disabilities, and 2) understand best practices from local experts' during and after the COVID-19 pandemic.  
  • In collaboration with Drexel and the Community College of Philadelphia, we are beginning a research project to adapt "Adulting"-an undergraduate course at UCLA focused on promoting practical life skills and knowledge for emerging adults-for autistic individuals.  
  • We received many excellent applications for AIR-P's first year of the Scholars Program that are currently being reviewed  
  • Network's first supplement submitted to Pediatrics with anticipated publication in summer 2021 
    Established partnerships with AUCD, Drexel University, and Kaiser, as well as 15 Collaborating Research Entities  
  • Our network has several collaborations in the works, such as the Healthy Weight Research Network (HWRN), the Life Course Intervention Research Network (LCIRN), and the Organization for Autism Research(OAR)  
  • Secured AIR-P research day at the Autism CARES meeting in July 2021 and the AUCD 2021 Conference in November 

What's Next: 

April is Autism Acceptance Month, and our ARRB is leading this month's webinar: Conducting Quality Participatory Autism Research. View the event archive here 

To highlight the work surrounding autism and to amplify the voices of neurodiverse professionals, we will be featuring an autistic researcher to speak at our webinars every quarter. Our webinars are held on the third week of every month from 1-2pm PST/4-5pm EST.  

Here are the dates for our upcoming webinars: 

  • May 21 - Dr. Rujuta Wilson: AIR-P node leader, Neurology 
  • June 15 - Drs. Priyanka Fernandes and Candace Gragnani: AIR-P node leaders, Community-based Lifestyle Interventions 
  • July 20 - Autistic Researcher Presentation (TBD) 
  • August 17 - Drs. Lisa Croen and Maria Massolo: AIR-P node leader, Gender, Sexuality, and Reproductive Health 
  • September 24 - Dr. Julian Martinez: AIR-P node leader, Genetics 
  • October 19 - Autistic Researcher Presentation (TBD) 

We will also have a dedicated AIR-P research day on Wednesday, July 14 from 12-3pm PST/3-6pm EST in conjunction with the Autism CARES annual meeting. AUCD is now accepting presentations, posters, and abstract submissions here until May 17th. 

For more information, please visit the following resources: