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Helping people with intellectual and visual disabilities engage in activity and mobility is considered crucially important to promote constructive occupation and a basic form of physical exercise (i.e., objectives that are essential for the individuals’ wellbeing and in line with their rights). This study assessed two new programs aimed at helping eight participants with intellectual and visual disabilities (four in each program) to independently move through specific indoor destinations, collect and transport objects, and access stimulation events (e.g., music) with the support of technology systems involving a smartphone linked to mini cameras and speakers. The second program was more advanced than the first and (a) required the participants to discriminate the objects used and transport two (rather than one) of them before any stimulation event, and (b) included telephone calls to and stories from preferred communication partners among the stimulation events. Each program was implemented using a single-case research design (i.e., a non-concurrent multiple baseline design across participants). The results showed that both programs were effective in enabling the participants to collect, transport, and put away objects and access stimulation independently during 20-min sessions. Based on the results, both programs might be considered useful tools to help people with intellectual and visual disabilities manage independent activity and mobility.

Parents are often expected to be the primary implementers of intervention for their young children with autism spectrum disorder (ASD). The provision of a few hours a week of intervention by a trained therapist, in addition to parent-implemented intervention, could increase child outcomes compared to parent-implemented intervention in isolation. This study evaluated the effects of a 12-week parent coaching program based on the Early Start Denver Model (ESDM) followed by 12-weeks of therapist-delivered ESDM intervention for four children with ASD. The effects of these interventions on child participation, functional utterances, and imitation were evaluated using a multiple probe across participants design. Children's participation improved during both interventions. Children generally showed greater improvements in imitation with the therapist than with their parents but showed minimal improvements in functional utterances. This suggests there may be some benefit to low-intensity therapy in addition to parent coaching, but more research is needed.

BackgroundPeople with severe or profound intellectual disability and visual impairment tend to have serious problems in orientation and mobility and need assistance for their indoor traveling. The use of technology solutions may be critically important to help them curb those problems and achieve a level of independence. ObjectiveThis study aimed to assess a new technology system to help people with severe to profound intellectual disability and blindness find room destinations during indoor traveling. MethodsA total of 7 adults were included in the study. The technology system entailed a barcode reader, a series of barcodes marking the room entrances, a smartphone, and a special app that controlled the presentation of different messages (instructions) for the participants. The messages varied depending on whether the participants were (1) in an area between room entrances, (2) in correspondence with a room entrance to bypass, or (3) in correspondence with a room entrance representing the destination to enter. The intervention with the technology system was implemented according to a nonconcurrent multiple baseline design across participants. Sessions included 7 traveling trials, in each of which the participants were to reach and enter a specific room (1 of the 7 or 9 available) to deliver an object they had carried (transported) during their traveling. ResultsThe participants’ mean frequency of traveling trials completed correctly was between zero and 2 per session during the baseline (without the system). Their mean frequency increased to between about 6 and nearly 7 per session during the intervention (with the system). ConclusionsThe findings suggest that the new technology system might be a useful support tool for people with severe to profound intellectual disability and blindness.

Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed.

BackgroundPeople with intellectual and sensory or sensory-motor disabilities tend to have problems performing multistep tasks. To alleviate their problems, technological solutions have been developed that provide task-step instructions. Instructions are generally delivered at people’s request (eg, as they touch an area of a computer or tablet screen) or automatically, at preset intervals. ObjectiveThis study carried out a preliminary assessment of a new tablet-based technology system that presented task-step instructions when participants with intellectual and sensory disabilities walked close to the tablet (ie, did not require participants to perform fine motor responses on the tablet screen). MethodsThe system entailed a tablet and a wireless camera and was programmed to present instructions when participants approached the tablet, that is, when the camera positioned in front of the tablet detected them. Two instructions were available for each task step. One instruction concerned the object(s) that the participants were to collect, and the other instruction concerned the “where” and “how” the object(s) collected would need to be used. For 3 of the six participants, the two instructions were presented in succession, with the second instruction presented once the required object(s) had been collected. For the other 3 participants, the two instructions were presented simultaneously. Instructions consisted of pictorial representations combined with brief verbal phrases. The impact of the system was assessed for each of the 2 groups of participants using a nonconcurrent multiple baseline design across individuals. ResultsAll participants were successful in using the system. Their mean frequency of correct task steps was close to or above 11.5 for tasks including 12 steps. Their level of correct performance tended to be much lower during the baseline phase when they were to receive the task-step instructions from a regular tablet through scrolling responses. ConclusionsThe findings, which need to be interpreted with caution given the preliminary nature of the study, suggest that the new tablet-based technology system might be useful for helping people with intellectual and sensory disabilities perform multistep tasks.

We surveyed New Zealand parents of autistic children to identify their perceived barriers and facilitators to accessing support services, including the influence of a family's level of financial resourcing. A total of 173 completed surveys were analysed. Service pathway factors were the greatest barrier experienced by participants, whereas facilitators related to providers tended to be most helpful. Lower family income was associated with a higher number of reported barriers. Both lower family income and having a child who identified their gender as non-binary were predictive of rating the extent of barriers higher. Parents of younger or of non-speaking autistic children on average reported a greater number of facilitators. Implications of these results for support service delivery and potential areas for future research are discussed.

Due to loss of spoken language and resulting complex communication needs, people with Rett syndrome are obvious candidates for communication intervention. To advance evidence-based practice and guide future research efforts, we identified and summarized 16 communication intervention studies published since a previous 2009 review on this topic. Studies were summarized in terms of (a) participants, (b) dependent variables related to communication, (c) intervention characteristics, (d) outcomes, and (e) certainty of evidence. Across the 16 studies, intervention was provided to a total of 100 participants from 3 to 47 years of age. Half of the studies used systematic instruction to teach aided AAC. Other interventions and associated technologies included music therapy, eye tracking technology, and transcranial stimulation. Positive outcomes (e.g., using AAC devices to make requests and/or initiate social-communication interactions) were reported in 13 of the studies. These 16 new studies provide additional guidance on how to enhance the communicative functioning of people with Rett syndrome. Future research directions are highlighted.

PurposeLamb-Shaffer syndrome (LAMSHF) is a neurodevelopmental disorder described in just over two dozen patients with heterozygous genetic alterations involving SOX5, a gene encoding a transcription factor regulating cell fate and differentiation in neurogenesis and other discrete developmental processes. The genetic alterations described so far are mainly microdeletions. The present study was aimed at increasing our understanding of LAMSHF, its clinical and genetic spectrum, and the pathophysiological mechanisms involved.MethodsClinical and genetic data were collected through GeneMatcher and clinical or genetic networks for 41 novel patients harboring various types ofSOX5 alterations. Functional consequences of selected substitutions were investigated.ResultsMicrodeletions and truncating variants occurred throughout SOX5. In contrast, most missense variants clustered in the pivotal SOX-specific high-mobility-group domain. The latter variants prevented SOX5 from binding DNA and promoting transactivation in vitro, whereas missense variants located outside the high-mobility-group domain did not. Clinical manifestations and severity varied among patients. No clear genotype-phenotype correlations were found, except that missense variants outside the high-mobility-group domain were generally better tolerated.ConclusionsThis study extends the clinical and genetic spectrum associated with LAMSHF and consolidates evidence that SOX5 haploinsufficiency leads to variable degrees of intellectual disability, language delay, and other clinical features.

Objectives: The present study evaluated a new smartphone-based program to help 12 participants with intellectual disability plus visual and motor impairments to self-regulate their stimulation input (thus avoiding their dependence on staff) through simple non-verbal responses. Method: Nonconcurrent multiple baseline designs across participants were used to assess the effects of the program. The technology used for the program involved a Samsung J4 Plus smartphone with Android 9.0 operating system, two voice recording devices, smart-plugs, and a mini speaker. The smartphone was provided with a Google account and Internet connection, which allowed the participants to access Google Assistant and Google Play Music. The participants could make requests for two different types of stimulation (e.g. songs and familiar voices or noises) by activating via hand pressure the two voice recording devices. The verbal request messages emitted by the devices were recognized by the Google Assistant, which led the smartphone to deliver the related stimulation. Results: During the baseline sessions (without the support of the voice recording devices), the participants failed to access any stimulation. During the intervention and post-intervention phases (with the support of the voice recording devices), all participants managed to access the types of stimulation available independently. The mean frequency of responses (i.e. activations of both voice recording devices) per session ranged between about 8 and 14. Conclusion: The new smartphone-based program can be viewed as a useful resource to enable individuals like the participants of this study to access preferred stimulation independently.

The Early Start Denver Model (ESDM) is a promising early intervention for promoting improved social, cognitive, and communication outcomes for young children with autism spectrum disorder (ASD). However, most studies evaluating group-based delivery of this program have used 15-25 h per week of intervention in specialized ESDM preschools with low child-teacher ratios. Thus, the positive results from such studies might not be obtained when this intervention model is evaluated in more typical inclusive preschool settings. In this study, a low-intensity version of the ESDM was delivered to three young children with ASD in their regular inclusive preschool by a certified therapist who did not typically work at any of the preschools. The intervention procedures were implemented for 3 h per week over an 8- to 10-week period. Data were gathered on children's levels of participation, imitation, and communication from weekly 10-min video recordings. The effects of the intervention were evaluated using a multiple probe across participants design with 3 weekly follow-up probes, 3 weeks after the intervention ended. All participants showed improvement in active participation, imitation and either intentional vocalizations or spontaneous functional utterances. These results were generally maintained at follow-up. This low-intensity version of the ESDM would seem effective for use in real-world preschool environments.

Immigrants have poorer health outcomes due in part to limited access to health care. Children with autism spectrum disorder (ASD) who have immigrant parents are diagnosed at a later age and those whose parents have limited English proficiency receive fewer hours of services. What contributes to these health care and support services disparities? This review examined eight qualitative studies published between 2010 and 2020 that explored barriers experienced by immigrant parents of children with ASD with regard to accessing diagnostic and/or intervention services. Key barriers included long wait times, language barriers, and limited health literacy. Recommendations for practice and future research are discussed.

This study examined the effectiveness of Self-Regulated Strategy Development (SRSD) to improve students' ability to write expository essays after reading social studies text. Third-grade general education teachers (N = 14) were randomly assigned by clusters to SRSD or a business as usual control condition. One hundred and eighty consented students participated in the full study. Teachers in the SRSD condition participated in 12 h of practice-based professional development (PBPD) before implementing the SRSD intervention. They also received 30-min biweekly coaching sessions across the 16 weeks of the study. Initially, teachers provided SRSD strategy instruction in TIDE ("Topic Sentence, Important Details, Explain Details, Ending") for planning and writing expository essays. Then, teachers spent an additional 8 weeks teaching students to use TIDE for creading, planning, and writing expository essays using social studies text. Multilevel random effects models indicated SRSD students included more genre elements in their expository essays (ES[subscript g] = 1.07) and produced essays of higher holistic quality (ES[subscript g] = 0.72) than control students when writing an expository essay using a source text. Students in the SRSD condition also included more genre elements when writing an expository essay drawing content from memory (ES[subscript g] = 1.09), and outperformed control students on a norm-referenced writing measure (ES[subscript g] = 0.79). Findings support implementation of the SRSD intervention in general education classrooms within content-areas and underscore future directions for combining writing, reading, and social studies instruction.

ObjectiveThis study aimed to help six participants with intellectual disability combined with sensory and motor impairments to make verbal requests through the use of a technology system involving cardboard chips and a smartphone.MethodThe participants were divided into two groups of three based on whether they did or did not have visual skills. Each group was exposed to the intervention with the technology system according to a non-concurrent multiple baseline across participants design. During the 20 min intervention sessions, the participants were provided with a smartphone and nine cardboard chips each of which had a picture or object (i.e., a mini object replica or raised object contour) and several radio frequency identification tags attached to it. To make a request, the participants were to bring a cardboard chip in contact with the smartphone. This read the tags attached to the cardboard and verbalized the request related to that cardboard.ResultsDuring the baseline (without cardboard chips and smartphone), the participants’ mean frequency of independent requests (all non-verbal requests) varied between zero and near 1.5 per session. During the intervention (with cardboard chips and smartphone), the participants’ mean frequency of independent requests (all verbal requests) varied between over 4.5 and about 10 per session.ConclusionThe results suggest that the system might be useful to help participants like the ones included in this study to make verbal requests with simple responses.

People with severe/profound and multiple disabilities may receive insufficient stimulation and correspondingly show low levels of happiness (satisfaction). Various stimulation strategies have been proposed to address this situation. This study aimed to extend the assessment of two of those strategies (i.e., self-regulated and staff-regulated stimulation strategies) with 12 participants who were exposed to each strategy. During intervention sessions with self-regulated stimulation, the participants sat at a desk and received stimulation if they pushed a panel in front of them thus activating a smartphone's proximity sensor. During intervention sessions with staff-regulated stimulation, they sat at a desk and received stimulation independent of any response. All participants showed increases in indices of satisfaction with self-regulated stimulation. Nine of them also showed such increases with staff-regulated stimulation. The participants' level of satisfaction during self-regulated stimulation sessions was frequently higher than that observed during staff-regulated stimulation sessions. Staff personnel interviewed about the two strategies provided higher scores for self-regulated stimulation. The self-regulated stimulation strategy may be considered preferable to the staff-regulated stimulation strategy because of its impact on participants' satisfaction and active responding.

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that occurs during the developmental period and affects overall cognitive, emotional, social, and physical health. Comprehensive screening for ASD can assist in diagnosis and intervention planning. The primary aim of this study was to develop and validate a screening tool for ASD based on the diagnostic guidelines of the International Classification of Diseases (ICD-11). The Social-Emotional Rating Scale for Autism Spectrum Disorder (SERA) was validated with 504 participants, including healthcare professionals who have worked with individuals with ASD and parents/primary caregivers of children with ASD. A confirmatory factor analysis on 78 participants with ASD and 27 participants without ASD indicated a good fit for the data. As an intervention planning tool, the developed SERA appears promising for identifying a person's social-emotional functioning level in line with autistic characteristics. [ABSTRACT FROM AUTHOR]

Parents are the logical intervention agents for young children with autism spectrum disorder (ASD). The early start Denver model (ESDM) is a promising early intervention approach for children with ASD that can be implemented by parents. This study evaluated the effects of training parents in the use of the ESDM. We used a non-concurrent multiple probe across participants design to evaluate the effects of providing five mothers of young children with ASD with one hour per week of training for 12 weeks. Outcome measures included mothers use of the ESDM techniques and measures of the children's levels of engagement and imitation, and expressive language skills. Maintenance of outcomes after one month was also assessed. Results showed four of the five mothers increased the percentage of ESDM techniques that they were using usually or consistently. Four of the five children showed some improvement on at least one of the child outcome measures. This suggests mixed results for supporting parents in the use of the ESDM. Implications and future research directions are discussed.

Purpose: Children with autism spectrum disorder (ASD) and complex communication needs are increasingly taught to use tablet-based speech-generating devices (SGDs). An important issue in designing such interventions is the selection of an appropriate format for displaying vocabulary. The purpose of this study was to determine (a) whether young children with ASD can be taught to use different SGD vocabulary display formats and (b) whether there are differences across the formats on a range of secondary measures (e.g., preference and generalization). Method: Five preschoolers with ASD (and prior experience with simpler aided augmentative and alternative communication) were taught to use grid and visual scene display SGDs during a play-based intervention. Acquisition of functional responding was assessed using a single-case experimental design. Secondary variables included error types, antecedents for communication, preference, and generalization. Results: All participants increased their use of functional target vocabulary using both the grid and the simple visual scene display. Of the five participants, three showed similar performance with both formats, whereas two had slightly higher rates of functional responding with the grid. Individualized differences across participants and formats were apparent across secondary variables (e.g., preference, error types, generalization). Conclusions: Both simple grid and visual scene displays may be viable options when teaching functional use of SGDs to children with ASD who have prior aided augmentative and alternative communication experience. Analyzing secondary variables beyond device acquisition (e.g., generalization, preference) may have implications for individualizing intervention.

Issues with sleep onset and maintenance are common among many children and adolescents with developmental disabilities. A lack of experienced practitioners, financial cost, and practical issues associated with providing parent coaching in the family home during evenings pose a number of barriers to successful sleep intervention. Telehealth interventions represent a potential approach for facilitation of the delivery of treatments for sleep problems in children and adolescents that may alleviate some of the challenges of delivering services equitably and in a timely manner. In the present review, we systematically searched for, summarized, and appraised the quality of ten studies that have used telehealth interventions for the treatment of sleep problems in children and adolescents. The majority of studies used Web-based platforms to deliver content as part of a multi-component intervention. For children, interventions were parent mediated; however, adolescents engaged directly in the intervention process, which typically included cognitive behavioral therapy for insomnia. Each of the studies reported positive overall treatment effects though only five of the studies met criteria that reflected strong methodological rigor, thus limiting the strength of the conclusions. This review identifies current telehealth practices and areas for future research.

Contemporary parent-implemented early intervention programs for children with autism spectrum disorder usually incorporate a range of techniques with different theoretical underpinnings. While research suggests that parents often learn to implement interventions with an acceptable degree of overall fidelity, there is limited research into parent use of individual intervention techniques. This study included five mothers of young children with autism spectrum disorder who participated in a 12-week parent training program based on the Early Start Denver Model. Ten-minute play samples were coded for the mothers' use of 18 specific Early Start Denver Model techniques before, during, and 1 month after the training program. The correlation between the mothers' use of each Early Start Denver Model technique and their child's level of engagement and expressive language was also calculated. Results suggest that all mothers increased the number of techniques that they were using from baseline to parent training. Some Early Start Denver Model techniques were moderately or strongly correlated with both child engagement and expressive language. There was considerable variation in outcomes across all mother--child dyads. These preliminary results have implications for how parents are trained/coached to implement interventions for young children with autism spectrum disorder.

BackgroundPeople with motor, visual, and intellectual disabilities may have serious problems in independently accessing various forms of functional daily occupation and communication. ObjectiveThe study was aimed at developing and assessing new, low-cost technology-aided programs to help people with motor or visual-motor and intellectual disabilities independently engage in functional forms of occupation and communication with distant partners. MethodsTwo programs were set up using a smartphone interfaced with a 2-switch device and a tablet interfaced with 2 pressure sensors, respectively. Single-subject research designs were used to assess (1) the first program with 2 participants who were blind, had moderate hand control, and were interested in communicating with distant partners through voice messages; and (2) the second program with 2 participants who possessed functional vision, had no or poor hand control, and were interested in communicating with their partners through video calls. Both programs also supported 2 forms of occupational engagement, that is, choosing and accessing preferred leisure events consisting of songs and music videos, and listening to brief stories about relevant daily topics and answering questions related to those stories. ResultsDuring the baseline phase (when only a conventional smartphone or tablet was available), 2 participants managed sporadic access to leisure or leisure and communication events. The other 2 participants did not show any independent leisure or communication engagement. During the intervention (when the technology-aided programs were used), all participants managed to independently engage in multiple leisure and communication events throughout the sessions and to listen to stories and answer story-related questions. ConclusionsThe findings, which need to be interpreted with caution given the nature of the study and the small number of participants, seem to suggest that the new programs may be viable tools for helping people with motor or visual-motor and intellectual disabilities independently access leisure, communication, and other forms of functional engagement.

ObjectivesThis study assessed whether a simple technology-aided program (i.e., a program involving the use of microswitches linked to a smartphone) could be set up to enable people with motor, sensory and intellectual disabilities to control preferred environmental stimulation through two different response movements.MethodsTen participants were involved in the study. Each of them was exposed to an ABAB design, in which A represented baseline phases without the program and B intervention phases with the use of the program. The study assessed whether the participants (a) had significant increases of each of the two response movements available and/or showed response variability across sessions and over time and (b) had signs of satisfaction/happiness during the study sessions, in connection with their stimulation access and control.ResultsThe program was effective in increasing the participants' responding and consequently their self-regulated stimulation input. Half of the participants showed a significant increase of both responses available from the first intervention phase. Other participants seemed to focus more on one of the two responses. Even so, they tended to have occasionally high performance frequencies also with regard to their non-dominant (not significantly increased) response. Finally, all participants showed clear signs of satisfaction/happiness during the intervention sessions.ConclusionsThe program represents a potentially useful approach for enabling people with extensive multiple disabilities to self-regulate their access to preferred environmental stimulation and improve their mood.

BACKGROUND A patient-derived organoid (PDO) platform may serve as a promising tool for translational cancer research. In this study, we evaluated PDO’s ability to predict clinical response to gastrointestinal (GI) cancers.METHODS We generated PDOs from primary and metastatic lesions of patients with GI cancers, including pancreatic ductal adenocarcinoma, colorectal adenocarcinoma, and cholangiocarcinoma. We compared PDO response with the observed clinical response for donor patients to the same treatments.RESULTS We report an approximately 80% concordance rate between PDO and donor tumor response. Importantly, we found a profound influence of culture media on PDO phenotype, where we showed a significant difference in response to standard-of-care chemotherapies, distinct morphologies, and transcriptomes between media within the same PDO cultures.CONCLUSION While we demonstrate a high concordance rate between donor tumor and PDO, these studies also showed the important role of culture media when using PDOs to inform treatment selection and predict response across a spectrum of GI cancers.TRIAL REGISTRATION Not applicable.FUNDING The Joan F. & Richard A. Abdoo Family Fund in Colorectal Cancer Research, GI Cancer program of the Mayo Clinic Cancer Center, Mayo Clinic SPORE in Pancreatic Cancer, Center of Individualized Medicine (Mayo Clinic), Department of Laboratory Medicine and Pathology (Mayo Clinic), Incyte Pharmaceuticals and Mayo Clinic Hepatobiliary SPORE, University of Minnesota-Mayo Clinic Partnership, and the Early Therapeutic program (Department of Oncology, Mayo Clinic).

The study assessed a new interactive technology system for helping six people with intellectual and visual disabilities exercise relevant physical responses embedded within a fairly straightforward activity (i.e., placing objects in containers). Activity responses consisted of the participants taking objects from the floor or a low shelf and placing those objects in a container high up in front of them (thus bending their body and legs and stretching their arms and hands). The technology involved a portable computer, a webcam, and three mini speakers whose basic functions included monitoring the participants’ responses, delivering preferred stimulation contingent on the responses and verbal encouragements/prompts for lack of responses, and assisting in data recording. The study was conducted following a non-concurrent multiple baseline design across participants. During baseline (i.e., when the system was used only for data recording), the participants’ mean frequency of responses per session varied between zero and nearly 12. During intervention (i.e., when the system was fully working), the participants’ mean frequency of responses per session increased to between about 34 and 59. Mean session duration varied between nearly 10 and over 14 min. The new system may be a valuable tool for supporting relevant physical activity engagement in people with intellectual and multiple disabilities.