ABSTRACT
Purpose of Study: The eXtraordinarY Babies Study is a natural history study of health and neurodevelopment in infants with a prenatal diagnosis of SCT. Given the increased risk for social difficulties and autism in SCT in later childhood and beyond, the study explores trajectories of early social communication development to identify early predictors of outcomes, and relationship of social communication skills to developmental profiles. Methods Used: A subset of 56 participants (XXY=43, XYY=4, XXX=9) from the eXtraordinarY Babies Study completed the Autism Diagnostic Observation Schedule- 2nd edition (ADOS-2), Toddler Module as part of the 12-month visit and The Bayley-3 Scales of Infant and Toddler Development. The ADOS-2 provides ratings of 0 (typical development), 1 (mild atypicality), and 2 (atypical) for communication, social interaction, and other behavior items, and an algorithm classifies total score into categories of: Little-No Concern, Mild-Moderate Concern, Moderate-Severe Concern. Analyses were limited to those who completed the assessment prior to COVID19 mask/shield requirements. Summary of Results: High rates of delayed or atypical development of early social communication skills were identified, with >75% of the sample showing scores of 1 or 2 in frequency of babbling, spontaneous vocalizations, gesture use, and pointing. 58% of the sample showed unusual eye contact and vocalizations. Over 50% received atypical scores on items assessing the quality of eye contact. Participants showed few restricted and repetitive behaviors. Results of ADOS-2 total scores: Little-no concern 50%, Mild-Moderate concern 35.7%, Moderate-severe concern 14.3%. No one was assigned a clinical diagnosis of ASD. For this group, Bayley-3 results showed average Cognitive (scaled score 10.8 sd1.9) and Fine motor skills (9.3 sd2.3), followed by lower Receptive (8.2 sd2.4) and Expressive Language (8.9 sd3.0) and below average Gross Motor skills (7.9 sd2.6). Receptive language scores negatively correlated with ADOS-2 Social Affect (r= -.38, p = < .001) and Overall Total (r= -.41, p = < .001). Conclusion(s): Even at an early age, toddlers with SCT are at increased risk for language, communication, and social interaction delays. While no participants were diagnosed with ASD at 12 months of age, social communication deficits known to be "red flags" for later diagnosis of ASD were seen in a subset of young children with SCT. Prospective follow-up will allow us to determine the trajectory of these deficits and those that may predict higher risk for more significant clinical symptoms.
ABSTRACT
BACKGROUND: Restrictions on in-person assessments during the COVID-19 pandemic were a challenge for an adult autism diagnostic service receiving over 600 referrals annually. The service sought to adapt the Autism Diagnostic Observation Schedule (ADOS-2) for online administration. AIMS: To investigate whether an online adaptation of the ADOS-2 performed comparably to the in-person ADOS-2. To obtain qualitative feedback from patients and clinicians regarding experiences of the online alternative. METHOD: Online ADOS-2 assessments were completed for 163 referred individuals. A matched-comparison group comprised 198 individuals seen for an in-person ADOS-2 assessment prior to COVID-19 restrictions. A two-way analysis of variance (ANOVA) was run to explore any effect of assessment type (online or in-person ADOS-2) and gender on total ADOS score. Qualitative feedback was collected from 46 patients and 8 clinicians involved in diagnostic decision-making after the online ADOS-2 assessment. RESULTS: A two-way ANOVA found no significant effect of assessment type or gender and no assessment type × gender interaction effect on total ADOS score. Qualitative feedback suggested that only 27% of patients would have preferred an in-person assessment. Nearly all clinicians reported gains from offering an online alternative. CONCLUSIONS: This is the first study to examine an online adaptation of ADOS-2 within an adult autism diagnostic service. It performed comparably to the in-person ADOS-2, making it a viable alternative when in-person assessments are not possible. As this clinic group has high rates of comorbid mental health difficulties, we encourage further work to determine whether online assessment approaches generalise to other services to increase options for patients and efficiencies for service delivery.
ABSTRACT
Background: There is growing interest in parent-delivered interventions (PDI) for children with autism. Treatment fidelity has been associated with child outcomes in PDI but little is known about what impacts fidelity. One factor not previously examined is parents' resolution to the autism diagnosis which involves adjusting expectations about the child and sensitively responding to their cues, strengths and needs. Relatively little is known about resolution in the context of autism but there is evidence of an association between resolution and parent wellbeing. Method: The study adopted a mixed methods approach to examine whether there is an association between PDI fidelity and parent resolution to diagnosis, and whether resolution is associated with parent wellbeing. Parents of 31 preschool children diagnosed with autism who attended up to 12 Parent-delivered Early Start Denver Model (P-ESDM) coaching sessions participated in the study. A thematic analysis of parent interviews was also undertaken to identify themes raised by resolved and unresolved parents in interviews. Results: There was no difference in overall mean fidelity scores between resolved and unresolved parents. Those classified as resolved had lower depression scores and parenting stress scores than parents classified as unresolved. The qualitative analysis revealed that parents' perceptions of their child's progress and their hopes for the future appeared to distinguish resolved and unresolved parents. Conclusions: Findings suggest that parent wellbeing and child progress may predict resolution which was not related to parent treatment fidelity in this study. Parent wellbeing and resolution status should be assessed at entry to PDI.