Adults with profound autism have unique healthcare needs that are often overlooked by providers. This student will expand an existing project to add a cohort of middle and older-aged autistic adults in a residential facility to measure overall health, co-occurring conditions, healthcare quality & satisfaction, and quality of life. Determining how co-morbid health conditions change as autistic adults age will enable services to be delivered that better meet people’s needs.
Improving Healthcare Access for Adults with Profound Autism
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.
Self-injurious behaviors such as headbanging, scratching, and biting are common in individuals with profound autism but are poorly understood. Some of these behaviors may be responses to pain or discomfort caused by a pre-existing medical condition or unmet medical need, but this is difficult to assess in those with a limited ability to communicate. As a consequence, the medical needs of people with profound autism may not always be identified through routine healthcare visits. Working with a large residential and day program service provider, this study will examine the relationship between medical conditions and self-injurious behaviors, and determine whether interventions addressing medical conditions could alleviate self-injurious behaviors. This project will also assess the feasibility, acceptability, and effectiveness of a new protocol designed to facilitate successful healthcare visits for people with profound autism.
Sleep problems are highly prevalent in individuals with profound autism and exacerbate emotional disturbances, cognitive deficits, and challenging behaviors. Existing studies of sleep in autism have mostly excluded children with profound autism. This omission has been blamed on the added burden, expense, and difficulty of studying sleep in children with profound autism in a lab setting. This grant will expand a sleep study currently in progress to add a cohort of children with profound autism. The goal of the study is to validate the use of a minimally invasive headband device that measures sleep quality at home and provides data on specific brainwave patterns during different phases of sleep in people with autism vs. people without autism
Individuals with profound autism may use a number of methods to try to communicate, including augmentative and alternative communication (AAC) systems. These systems range from pictures and communication boards to speech-generating devices and iPads and have been shown to improve overall communication and promote spoken language development. However, these AAC systems are not always accessible to all families. Utilizing the population of patients at the Children’s Hospital of Los Angeles (of which 40% are uninsured and 65% are from an ethnically diverse background), this study will examine factors influencing access to and use of AAC systems.
Females are less likely to receive an autism diagnosis than males and several studies are examining the biological, psychological, and developmental reasons for this disparity. One theory is that language abilities and patterns in females are superior to males, possibly reflecting better social ability, which may contribute to lower diagnostic rates. This study will look at a measure of language called prosody, or the rhythm, tone and pattern used during spoken language. Studies around prosody in autistic females are lacking, mostly because there are fewer girls with an autism diagnosis who can participate in research on prosody. This fellow will examine prosody in males and females with and without autism, and compare prosody to assessments of social function and interest. These results will inform caregivers, educators, and clinicians when considering a possible autism diagnosis for girls.
Given the historically higher prevalence of white males in autism research studies, many autism diagnostic and outcome instruments have not been specifically validated in people of color or in females. This study will recruit women and individuals from racially and ethnically diverse communities to understand how a measure of treatment outcome, called the BOSCC (Brief Observation of Social Communication Change), can be used more effectively in these communities.
Many autism referrals in low-resource settings originate from community mental health care clinics. Unfortunately, many mental health care providers are not trained in autism interventions and do not have the appropriate resources to provide support to parents or provide parent training for early developmental interventions. This fellow will work directly with ABA agencies that contract with Medicaid to determine how clinicians can better support parents participating in parent- mediated interventions.
Hypersensitivity to auditory stimuli, including even regular sounds and voices, is seen in a high percentage of people with autism. This project will expand on existing research at Vanderbilt looking at brain activity in autistic and non-autistic individuals with different levels of sound tolerance to understand the factors that play a role in the brain’s response to noise.
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.
Siblings have the potential to shape the developmental trajectories of individuals with autism. Early studies have shown the positive impact that a sibling can have on the outcome of an autistic brother or sister. However, these studies were unable to identify which particular aspects of being a sibling contribute most to this effect. This study will leverage existing data from about 5,000 families across multiple longitudinal studies to understand the role of a sibling in longer-term adaptive behavior, and to better identify specific factors that may influence this benefit. Findings from this research may inform intervention planning to maximize adaptive skill development across time and optimize outcomes in those with autism. The results may also provide important insight into the needs of undiagnosed siblings who may themselves need support.