Background An increasing number of families are seeking assessment and support for autistic children who present with Extreme (or Pathological) Demand Avoidance (E/PDA) behaviours. However, research suggests the needs of these families may not be well understood or met by services. This study identifies their experiences and support needs, focussing on their interactions with services. Method Qualitative, semi-structured, online interviews with 21 parents of child(ren) with a formal diagnosis of autism and E/PDA behaviours. Interviews were analysed using an inductive, reflexive thematic analysis at a semantic level. Results Four themes describe the distinct experiences of families: (1) Understanding and acceptance of E/PDA behaviours is lacking; (2) Attributing blame: Judgements of E/PDA behaviours by others; (3) Lack of tailored support for E/PDA behaviours; (4) The E/PDA journey results in distress for all family members. Themes form the basis for a new interpretative model of familial experiences of E/PDA in which lack of understanding and acceptance of E/PDA drives neuro-normative judgements about E/PDA behaviours and parenting quality, leading to inadequately tailored support and familial distress. Conclusion Parents’ accounts point to a breakdown in service provision for families of children with E/PDA behaviours whose ‘complex’ or ‘atypical’ presentation of autism does not fit neatly within existing classification systems and a ‘label-based’ service model. Improving education and understanding about familial experiences of E/PDA behaviours amongst professionals and services, with greater ‘personalisation’ and ‘formulation-based’ approaches is urgently needed to optimise outcomes and prevent harm.
Background Virtual Reality (VR) is making education more engaging and accessible, especially for students with Autism Spectrum Disorders (ASD), promoting inclusion and the development of STEM skills in innovative ways. The literature still reveals a significant gap in terms of appropriate educational resources adapted to the specific needs of these students, resulting in difficulties in their inclusion. With the growing need for inclusive approaches in education, it is essential to find solutions to support these students. The aim of this study is to validate the data collection methodology that will enable the development of Virtual Learning Environments with STEM content for students with ASD. Methods The Design Science Research (DSR) methodology was used to develop a VR artefact for students with ASD. In addition, the Delphi method was applied in the expert involvement phase, which will contribute to the validation of the artefact's specific requirements. Both will allow for an inclusive and distinctive approach to the development of an artefact, with the aim of offering an innovative educational experience, meeting the varied needs and learning styles of students with ASD, optimising the effectiveness of the proposed VLE. Results The results show a strong acceptance among experts, highlighting the potential positive impact of this approach, although there are aspects to be improved to ensure a more comprehensive and effective approach. Conclusions This study highlights the successful validation of an innovative virtual reality programme for students with ASD, highlighting the importance of interdisciplinary collaboration and the strong contribution to the advancement of inclusive education.
The BTBR T+ Itpr3tf/J (BTBR) mouse strain manifests a peculiar behavioral phenotype that mirrors the core symptomatology of autism spectrum disorders, including alterations in social-communicative behavioral domains, and the presence of repetitive/stereotyped behaviors. Concurrent immune and metabolic imbalances characterize the BTBR phenotype and are exacerbated by specific gene mutations, resulting in severe multi-organs imbalances that recapitulate the symptoms of human autoimmune and metabolic disorders. The present review aims to retrace and summarize state-of-the-art regarding the genetic, immune, and metabolic features of the BTBR strain and address its potential use as a valid model to study the multi-system etiology and pathogenesis of neurodevelopmental disorders.
Background: Autism is characterized by social difficulties, yet many autistic people value and desire social relationships. Given the limited research on autism in adulthood, particularly among those with lower cognitive ability, this study aimed 1) to compare self- vs informant-report of social relationships (acquaintances, friendships, and interpersonal difficulties) and 2) to compare social relationships, between more cognitively able (MCA) and less cognitively able (LCA) autistic young adults. Method: Participants included 101 autistic young adults (Mage=25.90; SD=1.41; 82.0 % male; 79.8 % White) and their informants. Participants were interviewed, and the Interpersonal Difficulties and Social Relationships sections of the Social and Emotional Functioning Interview (SEF) were analyzed. Participants were classified as MCA (IQ >= 70) or LCA (IQ<70). Results: For the MCA sample, informant and self-report SEF scores were all positively correlated and did not have significantly different median values. Weaker and non-significant associations emerged for social contexts outside of the home (e.g., at work) and more abstract concepts (e.g., quality of relationships). Although cognitive ability impacted the extreme SEF scores (e.g., having self-initiated reciprocal friendships), many social difficulties were shared by LCA and MCA young adults, according to informant reports. Conclusions: This study is one of few on social relationships and autism to focus on adulthood and include LCA young adults. Results indicate that informant-report provides useful information on more concrete aspects of social relationships in this population. Many autistic young adults, and LCA young adults in particular, may benefit from additional social supports, yet it is also essential to collaboratively consider what types of social experiences and relationships are desired and feasible for each person. More research and intervention tailored to LCA autistic young adults are needed.
Background Behavioral interventions based on the principles of applied behavior analysis (ABA) are considered the gold standard approach for treating challenging behaviors commonly exhibited by children with autism spectrum disorder (ASD). However, questions have arisen concerning the safety of implementing traditional ABA procedures for the treatment of challenging behavior in natural settings. Over the past decade, a treatment package known as skill-based treatment (SBT) has emerged that may allow challenging behaviors in this population to be addressed in a safe, efficient, and effective manner. Methods We reviewed and summarized studies utilizing SBT published in English between 2014 and September 2023 using PsychINFO and PubMed databases. Two independent reviewers screened citations for inclusion. Data abstraction was performed by one reviewer and verified by a second reviewer. Results Twenty-one studies (3 consecutive controlled case series and 18 utilizing single-case experimental designs) met the inclusion criteria describing SBT conducted with 87 individuals. The majority of individuals treated with SBT were autistic children with language levels varying from non-vocal to fully fluent. Treatments were implemented in a variety of settings at least 1–2 times per week, with treatment requiring a range of 4 - 48.5 h of clinician time. Rates of challenging behavior were reported to decrease by 98.2 % (range: 90–100 %) on average. Treatments were implemented via telehealth for 8 individuals (9.2%). Data concerning treatment maintenance was reported for just 7 individuals (8.1 %). Conclusions SBT is a potentially effective treatment procedure for challenging behavior that can be conducted in a variety of settings including the child’s home, school, and via telehealth. However, future research is needed to understand the long-term effectiveness of SBT. Randomized controlled trials of SBT are also necessary in order to study the safety and efficacy of this treatment approach.
