Thomas is 62 years old and has spent the past few decades involved in autism-related social/support groups among other organizations and has become a well-known self-advocate throughout Pennsylvania. For the past 15 years, he’s led a group called “Spectrum Friends” that helps people with autism come together, listen to guest speakers, make new friends, and go on fun field trips. He’s also won and been nominated for multiple disability/autism advocacy awards for his work within the community. Thomas continues to strive for greatness every day and is looking forward to sharing his life story and amazing experiences through ASDNext blogs!View all posts
Public Health and Autism Science advancing Equitable Strategies (PHASES) and Their Goals
A couple of months ago, I was invited to join a new Autism External Advisory Committee and I was excited because it is a new challenge and opportunity for me. The new advisory committee is called P.H.A.S.E.S. which stands for Public Health and Autism Science advancing Equitable Strategies across the life course. Autism is a common neurodevelopmental condition that affects functioning and well-being in a myriad of domains across the life course. Through the Autism Center of Excellence (ACE), PHASES application proposes to employ an overarching public health research framework to examine health determinates, health inequity–especially in under-represented diverse populations–and health services delivery and their impact on health outcomes. There are 4 projects that target unique, understudied groups characterized by potentially modifiable adverse outcomes: young children with delayed autism detection, autistic adolescents, and young adults with co-occurring conditions, older adults with co-occurring health and cognitive deterioration, and young autistic, minimally verbal adults at risk for poor healthcare transition. Click here learn more.
The information I am putting in this blog comes straight from the material given to the new PHASES committee which I will be serving on. The Center aims to address research goals at three different key life stages: Aim 1 investigates modifiable health determinates for autistic individuals; Aim 2 evaluates inequalities in health and health services, especially in underrepresented minorities and economically disadvantaged persons on the autism spectrum; and Aim 3 examines the relations between health service delivery and health outcomes. What are the specific aims of PHASES? With the increasing prevalence of autism spectrum disorder (ASD) and critical gaps in knowledge for health needs of this population have resulted in rising pressure on the health care delivery system across all stages of life. As a consequence, autistic persons experience health inequalities throughout their entire life, including delays in diagnostic services during childhood, gaps in treatment of co-occurring conditions – all which disproportionately affect minority and economically disadvantaged autistic individuals. Although, most autism research that investigates basic or clinical science questions in prevention of inequalities leading to adverse outcomes requires a public health research framework. This serves as a powerful tool to investigate contextual determinants of health–including social, biological, and environmental factors affecting well-being and quality of life over the life course.
However, public health research has been woefully under-utilized in the ASD field limiting our capacity to characterize and mitigate adverse health outcomes while readdressing health inequalities in vulnerable autistic populations. The overarching goal of ACE’s proposed PHASES committee is to address this gap in 4 studies using an integrated public health research framework to impact individual and population outcomes. What does this all mean? The frame embodies cyclical research to public health action path connecting discovery of health determinates in ASD. The use of this evidence-based research is to develop and test programs to improve health outcomes, and dissemination of such programs and the means to implement them in “real world” settings.
There is a lot more that goes into these four projects from the A. J. Drexel Institute that use a lot of scientific jargon that I won’t get into here since I don’t think the public would understand. However, these projects that the institute will be taking on could take years to implement. They hope to establish public health community impact, aligning to the 2021-2025 NIH -wide strategic plan, which includes cross-cutting theme of addressing public health challenges across the lifespan.
As I am a committee member of the PHASES projects, just reading over all of the materials they sent all on the committee would make your head spin. It is not easy reading material; you would have to have a general understanding of healthcare in the U.S. and how it effects the autism community across this country. I am not a scientist, so it took me quite a while to get the gist of what the A.J. Drexel’s PHASES projects are all about. But hopefully several years down the line these projects will help with Medicare and Medicaid issues for families living with autism.