Editorial
The present Special Issue of the International Journal of Developmental Disabilities features a number of articles addressing the important topic of improving the quality of life (QoL) for individuals with intellectual and developmental disabilities (IDD) as well as their caregivers. The issue showcases some of the recent advances in both practice and research aimed at enhancing QoL for this population.
Introduction
Autism Spectrum Disorder (ASD) presents a singularity for many academic research fields due to its complexity, heterogeneity, multidisciplinary nature, and unique challenges in studying individuals with the disorder. ASD is a neurodevelopmental disorder that affects an individual’s social interaction, communication, and behavior, and its spectrum nature means that individuals can present with a wide range of symptoms and severity levels. This heterogeneity poses a significant research challenge due to the difficulty in drawing generalizations and making broad conclusions. Additionally, the unique challenges in studying individuals with ASD, such as communication difficulties and sensory processing, often result in inaccuracies in collected data.
Given the research problems posed by the characteristics and symptoms of ASD, a range of cognitive and research fields, including neuroscience, biology, genetics, sociology, education, and technology, are recruited to study the phenomenon. It goes without saying that more often than not the limits of the theoretical framework in each of these cognitive and research fields is reached.
However, the neurodiversity and developmental trajectories of individuals with ASD reflect a range of cognitive differences that can lead to social isolation, misunderstandings, and other challenges embedded in social and cultural contexts. This complexity highlights the interplay between biological, cultural, and technological factors that shape human experience. By embracing diversity and accommodating different ways of thinking and learning, we may build a more inclusive and resilient society that can better address the challenges ahead.
Although different fields employ diverse methodologies and theoretical frameworks, there is a common goal of promoting the inclusion of individuals with ASD in the education system, labor market, and society in general. The reduction of stigma and discrimination against individuals with ASD, the improvement of attitudes towards them, and the dismantling of barriers to their inclusion can be achieved. As such, the study of ASD may not only advance academic research fields but also contribute to building a more equitable and inclusive society.
The special issue
The first two papers in this issue focus on the QoL of caregivers. The original study by Bitsika et al. suggests that child age, sex, and time of diagnosis are important variables to consider when studying stress, anxiety, and depression in carers of autistic children. It is well established that anxiety and depression levels in carers can result in negative health outcomes, such as relationship and cognitive difficulties, risk of coronary heart disease, suicide, and an elevated risk of mortality. While standardized measures of anxiety and depression are helpful, they do not always capture the daily stress levels and experience of being stretched beyond their limits that carers may face. The study which was carried out in Australia, Denmark, and Greece, suggest that the experience of caring for an autistic child, and the outcomes of that caring on the mental health of carers, was heterogeneous and had varying effects upon carer anxiety and depression across the three nations. Therefore, the study challenges the notion of a universal international intervention model for assisting carers and suggests that an individualized treatment model may be more effective in addressing carer anxiety and depression.
The second paper, authored by Niharika et al. investigates QoL in parents of children with ASD in India, using a self-reported questionnaire and the WHOQOL-BREF instrument. The authors collected data on socio-demographic details and QoL from parents of children with ASD and from parents of typically developing children. They found significant differences in QoL between the two groups, as well as a positive correlation between socio-demographic variables and QoL in parents of children with ASD. The authors conclude that their findings underscore the need for interventions aimed at improving family functioning, support services, and coping strategies.
The manuscript by Panganiban and Kasari explores the issue of joint engagement in autistic children, noting that they are less likely to engage with peers than nonautistic children, which can impede social communication development. The authors investigated the perceptions of educators towards their autistic students and their effects on implementing interventions aimed at promoting joint engagement. The results showed that educators’ perceptions of their students’ controllability over ASD behaviors predicted the joint engagement strategies used during play. Educators tended to use strategies promoting joint engagement for students perceived as abler to control their ASD behavior, despite their initial perceptions. However, the authors found that educators were able to learn and implement new joint engagement strategies.
The study by Bota et al. focused on practitioners’ perception of comorbidity of mental health and ASD in the management of challenging behaviors among children and adolescents in Kenya. The study collected data from practitioners, including assessment staff, mental health workers, regular teachers, teachers from special schools, and teachers from special units for children with ASD. The results revealed a positive and significant correlation between perception of challenging behaviors and mental health problems. The authors conclude that multidisciplinary synergy is needed to develop effective challenging behavior programs for children and adolescents with ASD.
Laermans et al. examined the use of off-label psychotropic drugs, which remains a contentious issue in the treatment of individuals with intellectual disabilities and challenging behavior. The authors aimed to establish evidence-based guideline recommendations and principles for the responsible prescription of off-label psychotropic drugs in relation to QoL. The authors obtained consensus from a 58-member international multidisciplinary expert Delphi panel on several general themes, including the importance of nonpharmaceutical treatments, comprehensive diagnostics, and multidisciplinary treatment. However, no consensus was reached on freedom-restricting measures, treatment plan and its evaluation, and informed consent. The authors conclude that further discussion is needed to address these unresolved issues.
People on the autism spectrum often encounter difficulties finding and maintaining employment. Nimante and colleagues conducted a study to determine whether young adults with autism think it is advisable to disclose their condition to their employer(s). They gathered in-depth data from participants through qualitative semi-structured interviews, followed by an inductive content analysis. The study revealed that young adults with autism do not disclose their condition to their employers or co-workers, even though they readily share this information with close friends outside of the workplace. The main reasons for non-disclosure identified in the study were (i) a desire not to be treated differently, (ii) fear of social stigma, and (iii) a perceived lack of benefit from disclosing their condition to their employer. The study participants also emphasized the importance of explaining to their employer the unique limitations each young person with autism faces and how to overcome them.
Gkiolnta et al. pilot study on robot programming for a child with ASD yielded exciting results. The study focused on using the robot ‘Codey Rocky’ for STEM education (Science, Technology, Engineering and Mathematics) in primary school children, and found that children with ASD and intellectual deficiency can benefit greatly from interacting with robots. The researchers observed a measurable increase in social and communication skills, as well as knowledge of the robot and its programming for the girl with ASD. Despite some presence of repetitive and stereotyped behaviours throughout the educational sessions, the girl showed a significant decrease in challenging behaviours. These findings support the use of socially assistive robotics (SARs) to support autistic children in improving their social skills and communication, as well as reducing challenging behaviours.
In the midst of the coronavirus pandemic, a comparative study was conducted by Iacob and colleagues in Romania and Greece to investigate the relationship between QoL, physical activity, sedentary behaviors, socio-demographic characteristics, and parental involvement in children with ASD. The study found that sedentary activities not only provide relaxation moments and distance from overstimulating environments during schooldays, but also tend to increase the QoL of children with ASD. However, the lack of physical activities can have negative effects on motor and sensory abilities in the long run. Therefore, the study offers valuable insights and recommendations by examining the delicate balance between the natural tendency of children with ASD to enjoy their sedentary activities during weekdays after school and the need for physical activities. Furthermore, the study examines the role of families and their ability to balance these activities, providing a better understanding of how to improve the QoL of children with ASD during the pandemic and beyond. The results of this study call for the implementation of strategies to support physical activity and sedentary behaviors in children with ASD, including increased parental involvement and community-based initiatives. Ultimately, the findings underscore the importance of considering the unique needs of children with ASD during times of crisis and the vital role that families and communities can play in promoting their well-being.
The fundamental ontological inquiry regarding autism’s essence and etiology appears to represent the culmination of research endeavors across a variety of scientific fields. One avenue of research investigates the perception and interpretation of sensory data, evaluating whether challenges arise from dysfunction within sensory organs or impaired processing within the brain. Within this medical and neuroscience domain, typical autism symptoms, including stereotypical behaviors, hypersensitivity, hyperactivity, and hypomobility, have been associated with sensory processing. This study, conducted by Gundogdu explores the correlation between auditory processing difficulties and behavioral issues exhibited by children diagnosed with ASD.
Datu’s study examined the relationship between kindness, knowledge about autism, and attitudes towards individuals with ASD among Filipino high school students. The researchers collected data from students using an online survey with items measuring kindness and knowledge about autism, as well as a vignette-based measure of attitude towards ASD. The results suggest that students’ knowledge about autism and kindness positively shape their attitudes towards ASD, even when controlling for age, gender, and previous contact with individuals with ASD. The implication of this study is that awareness about ASD, combined with kindness education, can promote positive attitudes towards individuals with autism and other developmental disabilities.
Valentini’s paper highlighted the poor outcomes for people with autism and intellectual disabilities and the need for optimal life-long services. The paper focused on services provided at sustainable communities and explored the make-up of such communities and the services they provide. The researchers used a survey to gather information on demographic, descriptive, and quality of life measures from two sustainable communities. Although the two communities offered similar services and employed similar staff, they carried out services in different ways. Nevertheless, both communities provided services that led to higher levels of quality of life. The paper made recommendations for sustainable communities and those considering such communities, as well as outlining areas for future research.
Conclusion
In conclusion, the quality of life of individuals with ASD is a complex issue influenced by various factors. Through a series of international research articles in this special issue of the journal, we have explored the importance of addressing these factors through appropriate interventions and support to help individuals with ASD lead fulfilling and meaningful lives. We have highlighted the crucial role of family and community support in enhancing an individual’s social skills, communication abilities, and coping strategies. Additionally, we have emphasized the critical need for timely and appropriate interventions, such as behavioral and communication therapies, occupational and sensory therapy, and speech therapy. Lastly, we have discussed how negative social attitudes towards ASD can lead to social exclusion, discrimination, and stigmatization, and how promoting acceptance of neurodiversity can help foster an inclusive and supportive environment for individuals with ASD. Overall, our articles aim to raise awareness about the importance of supporting individuals with ASD to improve their quality of life and promote their well-being.
Note from the editors
The editors of the IJDD would like to thank Christine K. Syriopoulou-Delli, the guest editor of this special issue on various aspects of QoL in research and practice for those with ID for her hard work and commitment in conceiving and producing this interesting special issue.
We would also like to thank the individual contributors, authors and reviewers of the papers featured in this special issue. The ID field is underpinned by QoL and the QoL framework supports the equality of persons, as reflected in concepts such as self-determination, emancipation, inclusion, and empowerment.
Arturo Langa and Brian Salmons