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.
Determining the effectiveness of the BOSCC in females and people of color
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.
Oversensitivity to touch is common in autism and can lead to discomfort and harm. In some cases, people with autism avoid other people’s touch but seek out tactile stimulation through self- stimulatory behaviors. Self-stimulation can be anything from finger tapping to headbanging, which is harmful and dangerous. While the differences in the brain’s response to different types of touch have been studied in neurotypical people, there is little information on the different responses in people with autism. This fellow will examine how the autistic brain responds to different types of touch, ultimately providing a biological basis for determining why some touch is avoided while some is sought out, which could improve therapy for dangerous self-stimulatory behaviors.
On this week’s podcast we interview Dr. Susan Daniels who is the National Autism Coordinator for the Department of Health and Human Services. This position is created by the Autism CARES Act (which is under reauthorization) and represents one of the only disorders that provides coordinating functioning across funding agencies. We talk about what her office does, what the IACC is responsible for, and what the strategic plan for autism from the IACC advises congress to do. She also discusses some upcoming events for Autism Awareness Month.
Links referenced in our conversation are below:
https://iacc.hhs.gov/publications/strategic-plan/2023/
On the first podcast of 2024, we describe a new paper in the Journal of the American Medical Association or JAMA which uses physiological measurements like heart rate and skin conductance to predict severe and dangerous behaviors, specifically aggression. If aggression can be predicted, it might be able to be prevented. It turns out aggression can be predicted up to 3 minutes before an episode occurs, in the future these measures can be used to possibly redirect aggression. In a separate study, the issue of stigma is addressed. There is an intense debate over “person first” vs. “identity first” language in autism, promoting recommendations of using one over the other because fear that person first language promotes stigma against autism. A new study shows that there is no added prejudice or fear using either person first or identity first language, but the stigma associated with schizophrenia is worse than it is for autism. What contributes to stigma? There is a wide range of experiences and perceptions of autism that need to be addressed. It’s not as simple as the language used.
searchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: “scammer” participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts.
Autism spectrum disorder (ASD) is a genetically and phenotypically heterogeneous disorder (1, 2) and it affects 1 out of 36 children (3). Due to its heterogeneity, the causes of ASD are still poorly understood and scientific research is now focused on the early identification of bio-behavioral markers to anticipate the age of diagnosis (4). Making an early diagnosis has positive implications in terms of implementation of timely evidence-based interventions and, consequently, better outcomes (5). In the complex arena of interventions for ASD, some of them are evidence-based, while others (a) are proposed without scientific basis (6), or (b) they have not yet completed the necessary steps to move from basic research to large-scale clinical application but are transferred to clinical practice. Regarding option b, in recent years, we have witnessed a worrying increase in institutes that proposing to families to treat ASD with stem cells from various sources, including those obtained from cord blood (7). The alarming aspect of this potential therapeutic proposal is the promise of significant clinical improvements in children who undergo this treatment. These institutes, which are often located in countries with low medical standards, are not proposing a research trial but the use of stem cells as a therapeutic option already validated by basic research. However, to date, can we say that the use of stem cells is an evidence-based treatment? The answer is no, and we will try in the following lines to explain the reasons for this negative answer.
Abstract
Emerging evidence suggests that the higher prevalence of autism in individuals who are assigned male than assigned female at birth results from both biological factors and identification biases. Autistic individuals who are assigned female at birth (AFAB) and those who are gender diverse experience health disparities and clinical inequity, including late or missed diagnosis and inadequate support. In this Viewpoint, an international panel of clinicians, scientists, and community members with lived experiences of autism reviewed the challenges in identifying autism in individuals who are AFAB and proposed clinical and research directions to promote the health, development, and wellbeing of autistic AFAB individuals. The recognition challenges stem from the interplay between cognitive differences and nuanced or different presentations of autism in some AFAB individuals; expectancy, gender-related, and autism-related biases held by clinicians; and social determinants. We recommend that professional development for clinicians be supported by health-care systems, professional societies, and governing bodies to improve equitable access to assessment and earlier identification of autism in AFAB individuals. Autistic AFAB individuals should receive tailored support in education, identity development, health care, and social and professional sense of belonging