Inclusive research recognises that people with intellectual and developmental disabilities (IDD) have the right to participate in, contribute to, and access research that concerns their lives. In this article, we introduce a special issue on inclusive research and future directions for engaging people with IDD as co-researchers, authors, reviewers, and readers of research. For this special issue, we sought original and conceptual papers from a range of disciplines that focused on inclusive research with people with IDD. Manuscripts addressed processes, resources, supports, and accessible formats, including Easy Read and plain English, that enable people with IDD to participate meaningfully in research and to access, receive, and share research information. Articles accepted for this special issue included papers focused on (a) preparing and supporting people with IDD to participate in research; (b) ethical, rights-based, and co-design considerations in inclusive research; (c) practical strategies and experiences from inclusive research teams, including the perspectives of self-advocates; (d) approaches for supporting understanding of complex research topics in health, behaviour support, quality assessment, and related areas; and (e) the use of Easy Read and plain English to make research more accessible. Inclusive research continues to advance the rights of people with IDD to shape research priorities, participate in knowledge production, and access research findings. This special issue highlights current progress while also identifying the need for continued work to ensure that inclusive research reaches people with diverse support and communication needs.
This study tested the feasibility and outcomes of an intensive summer social program (summerMAXyc) on the social functioning, ASD-traits, and behaviors of autistic children, ages 4–6 years (N = 12). The manualized 5-week group intervention was delivered 5 days per week, 6 h per day to groups of 6 children each, and it included skills instruction and therapeutic activities targeting social/social-communication skills, emotion recognition, and interest expansion. summerMAXyc utilized direct instruction, modeling, roleplay, feedback, repeated practice, and reinforcement, and parents also participated in weekly group parent training. High levels of fidelity and child and parent satisfaction, as well as no attrition or adverse events supported feasibility. Significant pretest–posttest improvements were found for the primary outcome of child social performance (rated by masked observers), and secondary outcomes of parent-rated ASD-traits, social skills, communication skills, and problem behaviors. The results from 2 main outcome measures were pooled with prior summerMAXyc pilot study results to explore child features potentially associated with pretest–posttest change scores. Findings suggested that change scores were not related to third variables. summerMAXyc was feasible and appeared to yield child benefits. Implications and recommendations for further study are provided.
Attention-deficit/hyperactivity disorder (ADHD) is associated with a range of mental and physical health comorbidities, including depression and gastrointestinal problems. ADHD is further associated with higher rates of adverse childhood experiences (ACEs). The double-jeopardy model assumes that ADHD and ACEs are cumulative risk factors affecting health outcomes. We aimed to test this core prediction of the model. Participants were recruited via the online platform Prolific. A sample of n = 131 adults with ADHD and a propensity-matched (age, sex) comparison group of adults without ADHD took part in the study (N = 262). Data was analysed using robust statistical methods, including Yuen’s t-test (group differences), Spearman rank correlations, and logistic binomial regression models. The ADHD group reported higher rates of ACEs, mental health, and gastrointestinal problems (medium to large effects). ADHD and ACEs both predicted emotional problems, but only ADHD predicted GI symptoms. To further explore this effect, we conducted a series of sensitivity analyses. Emotional problems predicted the presence of GI symptoms in addition to ADHD. Experiences of deprivation, but not threat, predicted GI symptoms over and above the effect of ADHD. The findings from this study support the double-jeopardy model by showing that ADHD and ACEs may be cumulative risk factors for the development of comorbid emotional problems.
Rights‑based, accessible research is increasingly emphasized in neurodevelopmental disorders. We piloted a community‑embedded, inclusive surf therapy program co‑designed with families of children and adolescents with intellectual disabilities (ID) in Japan. Single‑group, repeated‑measures design with assessments at baseline (Pre), post‑intervention (Post), and 1‑month follow‑up (1 M). Eight enrolled; six who attended ≥ 5 sessions and completed KIDSCREEN‑27 at all time points formed the primary analysis set. Feasibility outcomes were recruitment, attendance/adherence, retention, data completeness, and safety. Parent‑proxy KIDSCREEN‑27 subscales and total were analyzed with Friedman tests (Kendall’s W); standardized mean change Pre → 1 M (d_av) was reported. Feasibility was acceptable (median attendance 5/6; 1 M retention 6/8; no adverse events). KIDSCREEN‑27 Total (Overall HRQoL) improved (χ2(2) = 12.00, p = .002, W = 1.00; d_av = 2.22), as did Psychological Well‑Being (χ2(2) = 6.95, p = .031, W = .58; d_av = 1.70). Other subscales showed small‑to‑moderate, non‑significant changes. Inclusive, co‑designed surf therapy was feasible and safe and was associated with improvements in overall HRQoL at 1-month follow-up. A fully powered, controlled trial is warranted.
Autistic children with intellectual disability (ID) are at elevated risk for anxiety, yet cognitive behavioral therapy (CBT) programs are infrequently adapted for this population. This study provides a preliminary examination if the Building Confidence program can be adapted for an autistic child with limited verbal ability and co-occurring anxiety. A secondary aim was to assess program feasibility for the family and the impact of the treatment adaptations. This study employed a single-case AB design with multiple concurrently measured target behaviors with an 11-year-old autistic boy with intellectual disability. Treatment consisted of 16 bi-weekly CBT sessions with autism-informed adaptations, including visual supports, simplified cognitive strategies, and preferred interests. Anxiety-related behaviors were assessed across baseline and intervention phases using individualized parent ratings on the Youth Top Problems (YTP) scale and the Anxiety Disorders Interview Schedule (ADIS). Visual inspection and statistical analysis suggested a reduction in anxiety-related behaviors during the intervention phase (YTP1 d = 1.72, YTP2 d = 1.63, YTP3 d = 3.24). However, given the AB design with multiple concurrently measured target behaviors, a brief baseline phase, and a single participant, the findings should be interpreted as preliminary and descriptive rather than as demonstrating a functional relation between the intervention and outcomes. This preliminary case study suggests that CBT may be feasibly adapted for autistic youth with intellectual disability using developmentally tailored supports such as visual aids, simplified coping strategies, and preferred interests.
The features of autism and borderline personality disorder (BPD) overlap; autistic adult females are at particular risk of having an autism diagnosis missed and/or being misdiagnosed with BPD. This research aimed to explore perceptions of what triggers emotional distress and dysregulation (EDD) amongst people assigned female at birth (PAFAB) with BPD and autism from their own frames of reference. An in-depth qualitative study is presented, in which participants assigned to one of three groups according to their pre-existing diagnoses (Autism, Autism + BPD, or BPD) took part in a semi-structured interview. Data was analysed with inductive content analysis, and the number of participants mentioning each code was also counted. In participants’ experience, multiple triggers often act together to cause immediate emotional distress and possibly emotion dysregulation while various factors affect whether this escalates into a longer-term response involving further emotion dysregulation. Participants described EDD triggers relating to internal experiences, interaction with others, and external environments. The findings provide preliminary suggestion that some triggers—such as sensory overwhelm or feeling ‘abnormal or unacceptable to others’—may be a more common cause of EDD for autistic PAFAB in comparison to BPD-only participants. While limitations of the study necessitate further research, hypotheses have been generated to guide larger-scale studies concerned with differential diagnosis. Clinicians will also likely benefit from the richness of these findings regarding the EDD triggers of greater prominence for autistic PAFAB and those with BPD, for the purposes of clinical formulation and treatment.
The voices of people with intellectual disability are essential to the success of self-advocacy. When they speak up for themselves, their voices are authentic and can influence policy making, as well as promoting inclusion in society. The purpose of this paper is to provide a personal insight of a self-advocate’s impact on promoting inclusive participation in society. The self-advocate uses a narrative method to share his personal insight and story. His self-advocacy journey is supported by his mother and a small team who have been supporting him over time. It is important to emphasize that the self-advocate developed the concept and initial writing of this paper. This paper also builds on previous research about “Our Lives, Our Voices” (OLOV), a self-advocacy programme in Singapore. The personal insight shows self-advocacy is effective in building a self-advocate’s confidence and communication skills in increasing disability awareness and promoting inclusion. When people with intellectual disability are provided the opportunity to be part of decision-making and exercise their citizenship responsibilities, their voices can positively impact on society and at an international level. This personal narrative of a self-advocate further shows the importance of inclusive research where these advocates take lead to share their stories. Empowering people with intellectual disability to share their stories builds not only their confidence and independence, but their voices can inspire understanding and strengthen communities by reminding everyone that should be included in society. This personal narrative provides a level of authenticity in inclusive research.
Elevated stress levels in autistic adolescents may significantly hinder their quality of life and development. Stress Autism Mate (SAM) Junior, a mobile self-help tool, was designed in co-creation with adolescents with autism to enhance stress recognition and reduce daily stress. To improve its effectiveness, this qualitative study examined user experiences with the app, focusing on identifying factors that may influence users’ willingness to begin and continue its use. A total of 15 adolescents with autism (12 girls, 3 boys) aged between 12 and 18 years were recruited from three Dutch mental health care facilities. They were asked to use the SAM Junior app daily for at least 1 week before taking part in a 30-min semi-structured interview. Utilizing the User Experience Technology Acceptance Model as a theoretical framework, deductive thematic analysis was performed on four main themes: perceived usefulness, perceived ease of use, hedonic quality, and health improvement. While user experiences varied substantially, participants generally expressed moderate satisfaction with the app’s stress-reducing potential. Several features could be viewed as ambiguous, frustrating, and stress inducing, while some could also be overlooked. These hindrances limited both the app’s use and perceived effectiveness. Overall, the SAM Junior app was perceived as promising but flawed in its current form. The participants’ feedback demonstrated how autistic traits can contribute to technostress and shape user experiences, offering multiple directions to improve the app and similar mHealth interventions for autistic adolescents.
Depression is prevalent among autistic youth and has significant negative impacts on quality of life and daily functioning; nonetheless, there has been limited intervention research addressing depression for this group. This mixed methods study investigated the acceptability and appropriateness of a novel, behavior-based approach for treatment of depression symptoms in autistic adolescents without intellectual disability (i.e., Behavioral Activation for Autistic Adolescents, BA-A), as part of a single-arm/open trial with 15 autistic youth (11–16 years of age). BA-A is an individually delivered, 12-session manualized intervention. At the BA-A post-treatment assessment visit, autistic adolescents and their caregivers completed semi-structured qualitative interviews and validated quantitative measures of their satisfaction with BA-A. Autistic youth and their caregivers reported satisfaction with BA-A on validated and commonly utilized quantitative measures of intervention acceptability and appropriateness. Autistic adolescents and caregivers similarly indicated that BA-A is acceptable and appropriate in qualitative interviews as evidenced by favorably describing the intervention content/materials, structure, and flexibility of the implementation. Quantitative and qualitative findings provide converging evidence that BA-A is acceptable to autistic adolescents with depression symptoms and their caregivers, as well as appropriate for this population.
This study evaluated the feasibility and effectiveness of a motion-based gaming intervention designed to enhance social skills in individuals with autism spectrum disorders (ASD). Twenty-eight participants with ASD took part in 10 sessions (5 weeks), engaging in cooperative virtual games. Each session required coordination with a partner. Half of the participants (PEER group) collaborated with a peer, while the other half (EDU group) worked with a therapist. Neuropsychological and behavioral measures were collected at baseline (T0), post-intervention (T2), and after 3-month (T3). Both groups showed improvements in Theory of Mind, which were maintained at T3. Notably, the EDU group also demonstrated significant gains in Memory for Faces, possibly due to therapists’ focus on facial engagement. Motion-based gaming, especially when supported by educators, appears effective in improving social and cognitive skills in people with ASD. Limitations (i.e., the absence of a control group and test sensitivity) warrant consideration in future research.
Research into the role of the oculomotor system in attention deficit hyperactivity disorder (ADHD) has grown recently, but studies examining microsaccades are limited and contradictory, with tasks often confounded by high cognitive load. The current study aimed to explore the relationship between microsaccades and ADHD traits in adults with a diagnosis of ADHD, both those receiving medication (ADHD-M) and those who were unmedicated (ADHD-U), and a healthy control (HC) group. All participants (ADHD-M, N = 18; ADHD-U, N = 22; HC, N = 31) completed the Adult ADHD Self Report Scale and a simple sustained attention task whilst binocular microsaccades were measured in a cross-sectional study. A significant positive correlation was found between total ASRS score and microsaccade rate for the HC group, driven by a correlation between inattentive traits rather than hyperactive/impulsive traits. The same relationship between inattention and microsaccade rate was found for the ADHD-M group but not the ADHD-U group, who showed an opposite relationship. This research aligns with previous work finding that it is inattentive symptoms which are related to microsaccade features and demonstrates the need to consider medicated and unmedicated groups separately, which may have contributed to mixed findings previously. The findings here suggest that medicated individuals with ADHD show comparable microsaccade-inattention trait relationships to healthy controls which warrants further investigation to establish if medication normalises this relationship. Similarly, the distinct pattern of results for unmedicated individuals should be explored further in the context of conceptualisation of ADHD traits as a continuum.
Advances in genomics are reshaping how disability is understood, raising complex ethical, legal, and social issues for people with disabilities. This makes it essential to understand how people with disabilities perceive genomics and how they can be included in co-design approaches to genomics research. The We Need to Talk project explored how people with disabilities, including those with intellectual and developmental disabilities, view the impacts of genomic technologies and their role in inclusive genomics research. This paper outlines how we involved people with intellectual disabilities in the project and what they shared with us. We used a co-design approach for the We Need to Talk project where people with different types of disabilities were included in the governance of the project as well as the design and implementation of the research. Surveys were developed in different formats to make them accessible (online with text reading and voice recording, plain-language videos, interviews with easy read information). Two face-to-face national roundtables were held as well. Key considerations for genomics researchers were identified by people with intellectual disability. These included the value they bring to genomics research, their desire to be active participants rather than merely research subjects, and the supports they need to engage in inclusive genomics research. These findings are important to guide future inclusive research, policy, and implementation of genomics.
This study aims to develop and evaluate an Australian training program for disability support workers about psychotropic medicines, with a focus on supporting people with intellectual disability in safe and person-centred ways. A co-design approach will be utilised, underscored by a participatory action framework. The training program developed will follow Universal Design for Learning and person-centred focuses. Co-design will include people with intellectual disabilities, family members, members of the disability workforce, healthcare professionals, and educational designers. The development of the training program will include a learning needs analysis, rapid review, the development of a consumer advisory committee, expert panel group, focus groups, co-design events, pilot testing, feasibility testing, implementation of the training program, and evaluation of the training program. This training program will aim to improve the knowledge and confidence of psychotropic medicines for disability support workers, provide education on supportive decision-making, and reduce inappropriate use of psychotropic medicines.
The present study examined associations between parenting styles, parental encouragement of physical activity, and emotional and behavioral adjustment among autistic youth. Participants were 76 parents of school-aged autistic youth (54 boys, 22 girls; Mage = 10.75, SD = 3.67), who reported on their children’s physical activity, anxiety, conduct problems, and related parenting practices. A path model was used to assess patterns of associations among parenting dimensions, parental encouragement of physical activity, and child outcomes. Higher levels of authoritarian and permissive parenting were positively associated with child anxiety and conduct problems, whereas higher levels of authoritative parenting showed a negative association with conduct problems. In addition, parenting dimensions were indirectly associated with child adjustment through parental encouragement of physical activity, which was consistently associated with lower levels of both anxiety and conduct problems. Associations involving children’s physical activity were more limited and not consistently related to the adjustment variables, and therefore played a less central role in the overall pattern of findings, despite its primary association with parental encouragement. These findings highlight the role of parental encouragement as a behavior-specific parenting practice linked to both physical activity and broader aspects of child adjustment. The results contribute to a more nuanced understanding of how parenting styles and practices are associated with emotional and behavioral functioning in autistic youth.
Social cognition plays a critical role in the transition to adulthood for individuals with Autism Spectrum Disorder (ASD), impacting outcomes in employment, relationships, and independent living. This study examined the utility of the Edinburgh Social Cognition Test (ESCoT) in assessing social cognitive abilities in young adults with ASD before and after participation in the Launching! to Adulthood intervention. Participants included 58 young adults with ASD (74.1
This paper explores how Positive Behaviour Support (PBS) can be reframed through the lens of an autistic practitioner’s lived experience. It focuses on embedding the values of assent and compassion into PBS practice and how these values align with the human rights of people with neurodevelopmental disabilities. Using a narrative methodology, the author draws on personal lived experience as both an autistic individual and a PBS practitioner. The paper also engages with inclusive research and co-design literature to examine how lived experience can inform ethical and effective support practices. The paper identifies three key messages: Assent must be actively sought and respected as a fundamental human right. Compassion is a measurable and teachable skill that is essential for ethical behaviour support. Lived experience must guide the development of support systems, research, and policy. These findings challenge traditional models that exclude the voices of those most affected and highlight the importance of relational and rights-based approaches. Reframing PBS through a human rights lens requires the practical integration of assent and compassion into everyday practice. Grounded in autistic lived experience, this paper positions these values not as abstract ideals but as essential principles for inclusive and ethical support. This approach contributes to advancing more equitable disability policy, legislation, and research aligned with the UN Convention on the Rights of Persons with Disabilities (CRPD).
This research examined both the direct and indirect influences of childhood trauma and negative emotional state on ADHD symptoms in adults, highlighting the mediating effect of executive cognitive functions. The study comprised 182 adults diagnosed with ADHD, selected through purposive sampling within a cross-sectional design. Data collection utilized the Conners’ Adult ADHD Rating Scales Self-Report: Screening Version (CAARS-S: SV), the Childhood Trauma Questionnaire-Short Form (CTQ-SF), the Depression, Anxiety, and Stress Scale-21 (DASS-21), and the Amsterdam Executive Function Inventory (AEFI). To analyze the direct and indirect relationships of independent, mediating, and dependent variables, Partial Least Squares Structural Equation Modeling (PLS-SEM) was used. Findings indicated that both childhood trauma (β = .072; 95
Pediatric speech delay, occurring in 3–20 < 0.001) revealed significant differences in comorbidities between IQ groups, with ADHD and anxiety prevalent in normal-IQ children, while ASD and epilepsy were more common in the low-IQ group. The findings underscore the importance of cognitive stratification and culturally adapted neurodevelopmental assessments for precise etiological differentiation, leading to targeted early interventions, improved diagnostic pathways, and individualized management strategies.
To identify self-report instruments used to assess developmental coordination disorder (DCD) in adults and to evaluate the quality of their psychometric properties. A systematic review was conducted in two stages in accordance with PRISMA 2020 and COSMIN guidance. Seven databases and Google Scholar were searched. Search 1 identified self-report instruments used with adults with DCD. Search 2 retrieved studies on the development, adaptation, and psychometric evaluation of the instruments identified in search 1. Measurement properties and risk of bias were appraised using COSMIN procedures. Three instruments were identified: the Adult Developmental Coordination Disorders/Dyspraxia Checklist (ADC), the Functional Difficulties Questionnaire (FDQ-9), and the Adolescents and Adults Coordination Questionnaire (AAC-Q). Across instruments, the strongest evidence was found for selected aspects of structural validity and internal consistency, whereas content validity, reliability, and responsiveness were insufficient or absent. Major limitations were observed in instrument development, concept elicitation, comprehensibility testing, and content-validation procedures. Overall, the available evidence was not strong enough to support any instrument as a psychometrically robust standalone tool for adult DCD assessment. Current self-report instruments for adult DCD may help document perceived motor and functional difficulties, but they lack sufficiently strong psychometric evidence to support confident use as standalone measures for diagnosis or research classification. Future studies should prioritize rigorous content validation with adults, followed by high-quality evaluation of structural validity, reliability, measurement error, criterion validity, and responsiveness.
