Adapting parent-focused interventions for diverse caregivers of children with intellectual and developmental disabilities: Lessons learned during global crises

Parent-focused interventions have been designed to provide training and support to caregivers who are essential in achieving positive outcomes for children with intellectual and developmental disabilities (IDD). In 2020, significant crises, including the COVID-19 pandemic and continued racial tensions, profoundly impacted the livelihood of children with IDD and their families. Many ongoing efforts to address disparities among this population were halted temporarily and required further adaptations. Researchers adapted interventions and support to address the disparities impacting children with IDD and their families with limited guidance. We provide a descriptive case analysis of four parent-focused interventions that responded to the global crises to continue serving children with IDD and their families. The four distinct programs were based on applied behavior analysis and naturalistic, developmental-behavioral paradigms that were culturally adapted for families of young children with IDD from diverse cultural and socioeconomic backgrounds. We present the qualitative reports on the challenges and benefits that arose with adapting the four parent-focused interventions for telehealth implementation. We focused specifically on adaptations made in recruitment and retention, instrumentation and measurement, research staff training, and intervention delivery. We synthesize our experience with challenges and solutions in adapting parent-focused interventions for racially/ethnically and socioeconomically diverse children with IDD and their families. We conclude with recommendations for researchers and practitioners on methods for adapting parent-focused interventions to address the significant health disparities that impact racially, ethnically, and socioeconomically diverse children with IDD and their families.

Keywords: COVID-19; autism; intellectual disability; parent-focused interventions; practice; racial/ethnic diversity.

While previous work has identified the early predictors of language skills in infants at elevated familial risk (ER) and low familial risk (LR) for autism spectrum disorder (ASD), no studies to date have explored whether these predictors vary based on diagnostic outcome of ASD or no ASD. The present study used a large, multisite dataset to examine associations between a set of commonly studied predictor variables (infant gesture abilities, fine motor skills, nonverbal cognition, and maternal education level), measured at 12 months, and language skills, measured at 3 years, across three diagnostic outcome groups-infants with ASD (“ASD”), ER infants without ASD (“ER-no ASD”), and LR infants without ASD (“LR-no ASD”). Findings revealed that the predictors of language skills differed across groups, as gesture abilities were positively associated with language skills in the ER-no ASD group but negatively associated with language skills in the ASD group. Furthermore, maternal education level was positively associated with language skills in the ASD and LR-no ASD groups only. Variability in these early predictors may help explain why language skills are heterogeneous across the autism spectrum, and, with further study, may help clinicians identify those in need of additional and/or specialized intervention services that support language development. LAY SUMMARY: The present study identified predictors of language skills in infants with and without autism spectrum disorder (ASD). Maternal education level and 12-month gesture abilities predicted 3-year language skills in infants with ASD. Measuring these predictors early in life may help identify infants and families in need of additional and/or specialized intervention services that support language development.

Keywords: gesture; infant sibling; language; maternal education; motor; nonverbal cognition.

Assessment of autism spectrum disorder (ASD) relies on expert clinician observation and judgment, but objective measurement tools have the potential to provide additional information on ASD symptom severity. Diagnostic evaluations for ASD typically include the autism diagnostic observation schedule (ADOS-2), a semi-structured assessment composed of a series of social presses. The current study examined associations between concurrent objective features of child vocalizations during the ADOS-2 and examiner-rated autism symptom severity. The sample included 66 children (49 male; M = 40 months, SD = 10.58) evaluated in a university-based clinic, 61 of whom received an ASD diagnosis. Research reliable administration of the ADOS-2 provided social affect (SA) and restricted and repetitive behavior (RRB) calibrated severity scores (CSS). Audio was recorded from examiner-worn eyeglasses during the ADOS-2 and child and adult speech were differentiated with LENA SP Hub. PRAAT was used to ascertain acoustic features of the audio signal, specifically the mean fundamental vocal frequency (F0) of LENA-identified child speech-like vocalizations (those with phonemic content), child cry vocalizations, and adult speech. Sphinx-4 was employed to estimate child and adult phonological features indexed by the average consonant and vowel count per vocalization. More than a quarter of the variance in ADOS-2 RRB CSS was predicted by the combination of child phoneme count per vocalization and child vocalization F0. Findings indicate that both acoustic and phonological features of child vocalizations are associated with expert clinician ratings of autism symptom severity. LAY SUMMARY: Determination of the severity of autism spectrum disorder is based in part on expert (but subjective) clinician observations during the ADOS-2. Two characteristics of child vocalizations-a smaller number of speech-like sounds per vocalization and higher pitched vocalizations (including cries)-were associated with greater autism symptom severity. The results suggest that objectively ascertained characteristics of children’s vocalizations capture variance in children’s restricted and repetitive behaviors that are reflected in clinician severity indices.

Keywords: audio processing; objective measurement; vocalization.

Background

Autism spectrum disorder (ASD) is a neurodevelopmental disorder diagnosed based on social impairment, restricted interests, and repetitive behaviors. Contemporary theories posit that cerebellar pathology contributes causally to ASD by disrupting error-based learning (EBL) during infancy. The present study represents the first test of this theory in a prospective infant sample, with potential implications for ASD detection.

Methods

Data from the Infant Brain Imaging Study (n = 94, 68 male) were used to examine 6-month cerebellar functional connectivity magnetic resonance imaging in relation to later (12/24-month) ASD-associated behaviors and outcomes. Hypothesis-driven univariate analyses and machine learning–based predictive tests examined cerebellar–frontoparietal network (FPN; subserves error signaling in support of EBL) and cerebellar–default mode network (DMN; broadly implicated in ASD) connections. Cerebellar-FPN functional connectivity was used as a proxy for EBL, and cerebellar-DMN functional connectivity provided a comparative foil. Data-driven functional connectivity magnetic resonance imaging enrichment examined brain-wide behavioral associations, with post hoc tests of cerebellar connections.

Results

Cerebellar-FPN and cerebellar-DMN connections did not demonstrate associations with ASD. Functional connectivity magnetic resonance imaging enrichment identified 6-month correlates of later ASD-associated behaviors in networks of a priori interest (FPN, DMN), as well as in cingulo-opercular (also implicated in error signaling) and medial visual networks. Post hoc tests did not suggest a role for cerebellar connections.

Conclusions

We failed to identify cerebellar functional connectivity–based contributions to ASD. However, we observed prospective correlates of ASD-associated behaviors in networks that support EBL. Future studies may replicate and extend network-level positive results, and tests of the cerebellum may investigate brain-behavior associations at different developmental stages and/or using different neuroimaging modalities.

Background: Differences in face processing in individuals with ASD is hypothesized to impact the development of social communication skills. This study aimed to characterize the neural correlates of face processing in 12-month-old infants at familial risk of developing ASD by (1) comparing face-sensitive event-related potentials (ERP) (Nc, N290, P400) between high-familial-risk infants who develop ASD (HR-ASD), high-familial-risk infants without ASD (HR-NoASD), and low-familial-risk infants (LR), and (2) evaluating how face-sensitive ERP components are associated with development of social communication skills.

Methods: 12-month-old infants participated in a study in which they were presented with alternating images of their mother’s face and the face of a stranger (LR = 45, HR-NoASD = 41, HR-ASD = 24) as EEG data were collected. Parent-reported and laboratory-observed social communication measures were obtained at 12 and 18 months. Group differences in ERP responses were evaluated using ANOVA, and multiple linear regressions were conducted with maternal education and outcome groups as covariates to assess relationships between ERP and behavioral measures.

Results: For each of the ERP components (Nc [negative-central], N290, and P400), the amplitude difference between mother and stranger (Mother-Stranger) trials was not statistically different between the three outcome groups (Nc p = 0.72, N290 p = 0.88, P400 p = 0.91). Marginal effects analyses found that within the LR group, a greater Nc Mother-Stranger response was associated with better expressive language skills on the Mullen Scales of Early Learning, controlling for maternal education and outcome group effects (marginal effects dy/dx = 1.15; p < 0.01). No significant associations were observed between the Nc and language or social measures in HR-NoASD or HR-ASD groups. In contrast, specific to the HR-ASD group, amplitude difference between the Mother versus Stranger P400 response was positively associated with expressive (dy/dx = 2.1, p < 0.001) and receptive language skills at 12 months (dy/dx = 1.68, p < 0.005), and negatively associated with social affect scores on the Autism Diagnostic Observation Schedule (dy/dx = – 1.22, p < 0.001) at 18 months.

Conclusions: In 12-month-old infant siblings with subsequent ASD, increased P400 response to Mother over Stranger faces is positively associated with concurrent language and future social skills.

In this study we investigated the impact of parental language input on language development and associated neuroscillatory patterns in toddlers at risk of Autism Spectrum Disorder (ASD). Forty-six mother-toddler dyads at either high (n = 22) or low (n = 24) familial risk of ASD completed a longitudinal, prospective study including free-play, resting electroencephalography, and standardized language assessments. Input quantity/quality at 18 months positively predicted expressive language at 24 months, and relationships were stronger for high-risk toddlers. Moderated mediations revealed that input-language relationships were explained by 24-month frontal and temporal gamma power (30-50 Hz) for high-risk toddlers who would later develop ASD. Results suggest that high-risk toddlers may be cognitively and neurally more sensitive to their language environments, which has implications for early intervention.

Keywords: Autism; EEG; Early experience; Language development; Language input.

Autism Spectrum Disorder (ASD) is diagnosed three to four times more frequently in males than in females. Genetic studies of rare variants support a female protective effect (FPE) against ASD. However, sex differences in common inherited genetic risk for ASD are less studied, particularly within families. Leveraging the Danish iPSYCH resource, we found siblings of female ASD cases (n = 1,707) had higher rates of ASD than siblings of male ASD cases (n = 6,270; p < 1.0 × 10−10). In the Simons Simplex and SPARK collections, mothers of ASD cases (n = 7,436) carried more polygenic risk for ASD than fathers of ASD cases (n = 5,926; 0.08 polygenic risk score [PRS] SD; p = 7.0 × 10−7). Further, male unaffected siblings under-inherited polygenic risk (n = 1,519; p = 0.03). Using both epidemiologic and genetic approaches, our findings strongly support an FPE against ASD’s common inherited influences.

This week’s podcast explores the question about whether or not it is beneficial or just confusing to teach your child with autism multiple languages, or suppress the use of more than one language at home. Turns out, being bilingual helps with executive functioning (or those with preserved executive functioning can be bilingual), language, and provides benefits in verbal IQ depending on SES. In other words, it’s not harmful, it can be helpful, and those who choose to speak two languages at home should continue to do so if they feel that it is enhancing their child’s learning. Listen to the podcast here and find more information in the links below:

https://pubmed.ncbi.nlm.nih.gov/35102760/

https://pubmed.ncbi.nlm.nih.gov/34813032/

https://pubmed.ncbi.nlm.nih.gov/36222993/

New neurons can be generated in a dish (amazing in itself), and then these neurons studied to examine how they grow, expand, divide and connect. Using this technology, researchers are finding differences in different cell functions in different forms of autism. These differences are in proliferation, which is an increase in the number of cells, as well as the ability of those cells to signal to each other once they are formed. Some autism brains have too many cells, others do not proliferate as quickly as typical developing cells. These things are somewhat dependent on the genetic background which controls head size.

While these different forms of autism all have differences in proliferation, sometimes in different directions, they are all altered, regardless of the genes involved. So, is this one basic biological features that may help identify autism from the earliest points in development? Since they can be studied at any time in life, is this a new biomarker? Much needs to be studied but please listen to this week’s ASF podcast with Dr. Robert Connacher to learn more about the studies going on at Rutgers University to examine this issue.

https://www.sciencedirect.com/science/article/pii/S2213671122002089

We’ve heard a lot about social robots – do they help? One or two studies are not going to answer this, but a systematic review and meta analysis will! It turns out when you combined all the data, they do help in social abilities, but not other areas. This is how technology can help those with autism, especially technology which can be adapted to address the heterogeneity across the spectrum. And what about more subtle changes in the environment like light, sound, the built environment in classrooms and the home? Are there things that can be done that should be taken into account when these things are being built or modified? Again, a review article can help decipher all of the little studies that have been published over the year. Listen here for specific recommendations for builders, architects, and even you as you make your home more autism friendly.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0269800

https://journals.sagepub.com/doi/10.1177/13623613221102753?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

https://lukerosen212.medium.com/the-supreme-courts-decision-impact-on-the-rare-genetic-disease-community-f9ac22bd1411

The amygdala has been shown to be differently sized in autistic people – at first it is too big then it becomes smaller than typically developing people. But how early are these differences seen and does it relate to a diagnosis? The Infant Brain Imaging Study tackled this question in a recent study which compared those who were likely to develop autism at 6 months to those with Fragile X to see if there were differences and if it was specific to autism. Their findings will surprise you and have implications for targeted supports and interventions. Listen to the podcast here.

https://pubmed.ncbi.nlm.nih.gov/35331012/

At this year’s International Society of Autism Research meeting in Austin, TX, there was a variety of themes explored. From early development and milestones, to intervention and supports, to different features like sensory issues, treatment, and how to solve the problem of heterogeneity. It comes down to this: Autism means different things to different people. This is just a small subset of everything that was presented at INSAR 2022 and I hope that if you want to see more, you advocate to have the presentations posted online or even have the program book made available publicly. In the meantime, enjoy the 30 minute summary here.

www.autism-insar.org