Improving Reading Skills in the Autism Community

Project RISE, based at Lehigh University, is designed to develop new reading instruction strategies for people with intellectual and developmental disabilities.   The ASF accelerator grant will expand the focus of Project RISE by targeting a subset of the students who also have autism to investigate the unique needs of these students, as well as the knowledge, perception, and expectations of their teachers. This study will identify gaps in approaches designed to help autistic people learn to read, including how teachers deliver information to students.  It will also identify specific gaps in teacher training regarding working with autistic students.

This project is co-sponsored by the Solving the Mystery of Autism Foundation.

The Autism Biomarkers Consortium for Clinical Trials (ABC-CT) is a multicenter research study based at Yale that also includes Duke University, Boston Children’s Hospital, the University of Washington/Seattle Children’s Research Institute and the University of California, Los Angeles. The aim of the consortium is to develop reliable and objective measurements of social function and communication in people with autism, based on underlying neurobiological signals rather than on behavior. To date, measuring several of these biological signals (by both the ABC-CT and other research groups) as objective markers, has only taken place in a laboratory environment by showing participants videos on computers.   

Because many autistic individuals cannot sit still in a clinical setting, and because people normally don’t encounter the world in front of a computer,  it is not known if these biomarkers are valid in real-life settings. The ASF accelerator grant will enable researchers to expand their study by going out into the community with mobile biomarker measuring devices that allow participants to move freely rather than be tethered to a computer.  Data from this portion of the project will provide information about whether specific biomarkers are present in real-world settings. It will also enable researchers to access a broader diversity of participants. 

Early intervention is vital for children on the autism spectrum but is often only available after a formal diagnosis. Because of the COVID- 19 pandemic, many assessments are now conducted online. This change has sometimes occurred without studying whether modifications made to support online assessments affect the outcomes of the assessments. Researchers at the University of Massachusetts Boston, the University of Washington, Rush University Medical Center, and Michigan State University recently adapted an assessment protocol (the Communication Play Protocol; CPP), to be conducted as an online assessment of ASD (RISE-CPP). ASF’s funding will allow researchers to determine if clinicians can diagnose ASD online using the RISE-CPP protocol as accurately as they can using traditional in-person assessments. An online version has the advantages of possibly reaching a more diverse community and improving opportunities for early intervention.

Quality of Life (QoL) outcome measures have traditionally excluded autistic individuals with minimal verbal ability or cognitive disability. The Patient-Reported Outcomes Measurement Information System (PROMIS®) Autism Battery – Lifespan (PAB-L) is a
recently developed instrument to measure autistic QoL across the lifespan. Although PAB-L has been shown to be an acceptable QoL measure in autism, nonverbal people with cognitive disability were underrepresented among participants in the original validation studies. This grant will expand the research on the PAB-L to examine whether it is appropriate in those with profound autism, and also determine what changes, if any, should be made to effectively measure quality of life in this underserved population.

Up to 90% of people with autism experience GI distress. Although these symptoms often occur in children and adults, there is a lack of research focused on addressing GI dysfunction in autistic adults. A current study is gathering input from a group of autistic adults in order to develop a set of recommendations for improving GI health in adults. This grant will provide funding to expedite data collection, analysis, and dissemination of the outcomes of this study so that results can be seen up to a year earlier.  These recommendations will shape future research by prioritizing the most relevant GI concerns identified by autistic adults and interdisciplinary collaborators, leading to the development of better treatments and overall approaches to GI health in people with autism.

2014University of North CarolinaDara Chan