By Katy Heerwagen
At the Autism Assessment, Research, Treatment and Services (AARTS) Center, we see a wide range of individuals with autism spectrum disorder. As a lifespan center, we may see a 12-month-old for an evaluation and hours later provide therapy for a man in his 40s. In a given day, I can deliver play-based interventions to a nonverbal 2-year-old boy in the morning and provide career-focused counseling to a 27-year-old woman exploring technology jobs in the afternoon. We encounter individuals who have been able to develop a comprehensive program of services and those who continuously struggle to access often-costly resources.
In each of my experiences, I return to the same thought: How can a single disorder look so vastly different for every individual I see?
‘So much we do not know’
This question is at the center of a new research initiative led by members of various departments here at Rush. The SPARK study — Simons Foundation Powering Autism Research for Knowledge — is, at its core, an ambitious, first-of-its-kind autism genetics study aiming to involve 50,000 individuals with autism and their family members. The goal is simple: to advance our understanding of the genetic components of autism and speed up autism research. In adopting this mission, we acknowledge that there is still so much we do not know, and that we need the investment of tens of thousands of individuals to answer the many questions that remain.
For us here at Rush, our participation means connecting as many individuals with autism and their family members with the SPARK study. The study can be done entirely online, a first within the autism community, and certainly one of the major draws for participating. Family members or individuals with autism will register online at sparkforautism.org/rush and provide an address where they would like to receive their saliva collection kits. From the comfort of home, each participant will provide a saliva sample which will then be sent free of charge to a lab for genetic analysis. The SPARK team will examine a specified set of genetic markers suspected of having links to autism, and will return to families any positive results. For their participation, families will be compensated $50. Though families are encouraged to do the entire process from home, Rush happily accommodates any families needing on-site or over-the-phone support.
To characterize this as merely a genetics study, however, is to miss the larger potential for impact as well as my own, personal reason for commitment to SPARK. For me, SPARK represents an opportunity to connect individuals to a large, national research community as well as to our local autism community in the Chicago area. I have yet to have a conversation solely about SPARK. Most of my calls or in-person interactions involve presenting SPARK and connecting families to our Autism Resource Directory and services available throughout the community.
SPARK is also about inclusivity. Where previous genetics studies have focused exclusively on biological, intact families consisting of a biological mother, father and child, SPARK is open to any individual with a diagnosis of autism, from any family structure. Additionally, because the study can be done from home, factors like transportation or proximity to a research institution are no longer barriers to participation. In this way, SPARK cuts across the socioeconomic, racial and ethnic lines that have traditionally limited autism research.
Lastly, I have seen the power of SPARK to serve as a community builder here in the Chicago area and beyond. While the autism community is saturated with services and providers, these often operate in silos. For us at Rush, SPARK has become the platform through which we are able to transcend disciplines and service areas. I am in the community on a regular basis communicating with providers, schools and advocacy organizations — all of whom share a commitment to serving individuals with autism and their caregivers. Building community engagement and investment in SPARK becomes a gateway for further discussions about collaboration.
SPARK has already been a transformative experience for myself and for the SPARK team members at Rush, who span the departments of Psychiatry, Developmental-Behavioral Pediatrics, Pediatric Neurology and Rush Neurobehavioral. It has pushed us to make stronger interagency partnerships, engage more regularly with individuals and families in the community, and involve a larger, more diverse population in the exciting field of autism research. By participating in SPARK, those with autism join a national research movement with unprecedented potential for future impact while gaining immediate access to resources and opportunities. We will continue in our efforts to ensure every individual with autism in Illinois, Iowa, Indiana, Michigan and southeastern Wisconsin participates in the SPARK movement.
Katy Heerwagen, EdS, is a community outreach specialist with the AARTS Center at Rush.