Editor's note 8/31/22: The rate of people with autism was corrected to one in 44.
An agenda for autism research is explored in 21 articles in a digital supplement to the April issue of Pediatrics.
About one in 44 people has autism, but only half of them receive comprehensive primary care consistent with the AAP-recommended medical home model, according to the supplement “Promoting Lifespan Health and Well-Being through the Autism Intervention Research Network.”
The Autism Intervention Research Network on Physical Health (AIR-P), under the leadership of the University of California, Los Angeles (UCLA), promotes scientific collaboration and infrastructure to increase life expectancy and quality of life for individuals with autism and their families, especially those in underserved and vulnerable populations.
"With the recognition that a substantial proportion of the population experiences autism, a frameshift towards autism needs to occur," writes supplement editor Alice A. Kuo, M.D., Ph.D., M.B.A., FAAP, principal investigator of the AIR-P and UCLA professor of internal medicine, pediatrics, and psychiatry and biobehavioral sciences at the David Geffen School of Medicine.
Individuals with autism are a diverse group and have unique sociocultural characteristics that may contribute to differences in biological risk of co-occurring conditions such as cardiovascular disease or cancer.
The supplement focuses on a public health model of disability, which aims to identify and address barriers on a population level. Autism is viewed as an identity similar to gender and race — not as a condition that requires a cure.
Key research areas
The AIR-P focuses on six research “nodes” on the physical health of individuals with autism through their lifespan:
- primary care services and quality,
- community-based lifestyle interventions,
- health systems and services,
- gender, sexuality and reproductive health,
- neurology and
Papers address promoting healthy lifestyles and well-being, improving care and service delivery for youths transitioning to adulthood, the role of genetic testing, sexual and reproductive health, race and disability, suggestions on respectful autism language, and barriers to inclusive learning.
Commentaries highlight issues that overlap with research areas, such as the impact of the COVID-19 pandemic on individuals with autism, training the next generation of researchers and scientists, and the role of higher education in supporting youths’ health and academic success.
Original papers cover hospital inpatient stays, family perceptions of health care access for young adults receiving disability services, and reproductive health and substance use education for youths. In the area of neurodiversity research, topics include a residency program curriculum to improve health care transitions and emergency visits for children with autism and children with attention-deficit/hyperactivity disorder.
AIR-P created the first Autistic Researchers Review Board, which includes eight investigators who have autism and research expertise. They will assist in vetting and/or co-developing all research supported within the network.
Among its goals, the AIR-P network plans to continue to facilitate research, publish an annual research supplement, present at conferences and develop resources for families, clinicians and others.
Autism Intervention Research Network on Physical Health, https://airpnetwork.ucla.edu/