Podcast: Toothbrushing – it’s not for sissies

Parents or caregivers of children with ASD sometimes have a lot of difficulty helping their child brush their teeth. Parents and caregivers of children not on the spectrum have difficulty helping their child brush their teeth. By working with families on an individual level, coaching, encouraging and breaking down each of the steps of tooth brushing into something manageable, a group of Medicaid-eligible parents helped their children learn these skills on some level by the end of the study. Incredibly, 93% of parents who are trying to do it all with less, stayed in the program and felt more confident about their abilities. This study also used a randomized clinical trial design which compared the training and coaching with just those who got some toothbrushes and toothpastes in the mail. In this week’s #ASFpodcast, you get to hear from the leaders and the therapists who helped these families, what they did, and what worked. Join me with Dr. Eric Butter, Kelly Birmingham and Dr. Rachel Fenning to hear more about this study. Listen to the podcast here.

https://pubmed.ncbi.nlm.nih.gov/35211746/

Participation in research can provide direct and indirect benefit to individuals with autism spectrum disorder (ASD), their caregivers, families, and society at large. Unfortunately, individuals with high support needs, including those with intellectual disability, cognitive disability or minimal verbal ability, are often systematically excluded from research on ASD. This limits the ability to generalize discoveries to all people with ASD, and results in a disparity in who benefits from research. This piece outlines the importance and extent of the problem, which is part of a broader lack of inclusivity in ASD research. It also provides examples of studies that have directly addressed issues that arise when conducting inclusive research and makes recommendations for researchers to reduce disparities in research participation.

Keywords: Inclusion; Intellectual Disability; Participation; Research.

Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research. We suggest community-academic partnerships as one promising approach that results in high-quality research built on cultural competency, respect, and shared decision making.

Keywords: Autism; Engagement; Ethnicity; Participation; Race; Socioeconomic status

Awareness of autism has grown monumentally over the past 20 years. Yet, this increased awareness has not been accompanied by improvements in services to support autistic individuals and their families. Many fundamental questions remain about the care of people with autism—including which interventions are effective, for whom, when, and at what intensity. The Lancet Commission on the future of care and clinical research in autism aims to answer the question of what can be done in the next 5 years to address the current needs of autistic individuals and families worldwide

Environmental health, toxic chemicals, autism, environment

Background: Although autism spectrum disorders (ASD) are among the most heritable of all neuropsychiatric syndromes, most affected children are born to unaffected parents. Recently, we reported an average increase of 3-5% over general population risk of ASD among offspring of adults who have first-degree relatives with ASD in a large epidemiologic family sample. A next essential step is to investigate whether there are measurable characteristics of individual parents placing them at higher or lower recurrence risk, as this information could allow more personalized genetic counseling.

Methods: We assembled what is to our knowledge the largest collection of data on the ability of four measurable characteristics of unaffected prospective parents to specify risk for autism among their offspring: (1) sub clinical autistic trait burden, (2) parental history of a sibling with ASD, (3) transmitted autosomal molecular genetic abnormalities, and (4) parental age. Leveraging phenotypic and genetic data in curated family cohorts, we evaluate the respective associations between these factors and child outcome when autism is present in the family in the parental generation.

Results: All four characteristics were associated with elevation in offspring risk; however, the magnitude of their predictive power-with the exception of isolated rare inherited pathogenic variants -does not yet reach a threshold that would typically be considered actionable for reproductive decision-making.

Conclusions: Individual specification of risk to offspring of adults in ASD-affected families is not straightforwardly improved by ascertainment of parental phenotype, and it is not yet clear whether genomic screening of prospective parents in families affected by idiopathic ASD is warranted as a clinical standard. Systematic screening of affected family members for heritable pathogenic variants, including rare sex-linked mutations, will identify a subset of families with substantially elevated transmission risk. Polygenic risk scores are only weakly predictive at this time but steadily improving and ultimately may enable more robust prediction either singly or when combined with the risk variables examined in this study.

Keywords: Early detection; Family studies; Genetic counseling; Personalized medicine; Reproductive health planning.

Multimodal exploration of objects during toy play is important for a child’s development and is suggested to be abnormal in children with autism spectrum disorder (ASD) due to either atypical attention or atypical action. However, little is known about how children with ASD coordinate their visual attention and manual actions during toy play. The current study aims to understand if and in what ways children with ASD generate exploratory behaviors to toys in natural, unconstrained contexts by utilizing head-mounted eye tracking to quantify moment-by-moment attention. We found no differences in how 24- to 48-mo children with and without ASD distribute their visual attention, generate manual action, or coordinate their visual and manual behaviors during toy play with a parent. Our findings suggest an intact ability and willingness of children with ASD to explore toys and suggest that context is important when studying child behavior.