Abstract
Children, adolescents, and young adults with rare genetic syndromes, neurodevelopmental disorders, and multiple disabilities may experience significant problems while dealing with everyday life environmental requests. Besides extensive motor impairments, intellectual disabilities, and communication difficulties, they may exhibit challenging behaviors. Clinical conditions may be deleterious on their social image, status, and quality of life. A practical way to tackle this issue is represented by assistive technology-based interventions. A narrative review on the newest empirical contributions available in the literature over last five years (i.e., 2015-2020) was presented. Nineteen studies were reviewed. Five main categories of studies were identified, namely (1) adaptive responding, (2) executive functions, (3) communication, (4) gait and locomotion, and (5) challenging behaviors. Results were satisfactory although occasional failures were evidenced. Some helpful insights were emphasized, and future directions for both research and practice were critically discussed.
TopIntroduction
Children, adolescents, and young adults with rare genetic syndromes (e.g., Angelman, Cornelia de Lange, Cri du Chat, fragile X, Prader-Willi, Rett, and Williams syndromes) may have significant difficulties while tackling everyday life environmental requests. Due to communication impairments, executive functions abnormalities, intellectual disabilities, motor delays, lack of speech, and/or socio-emotional disturbances, they may experience relevant problems in adaptive responding, and may exhibit challenging behaviors. Closely linked to their clinical conditions, neurodevelopmental disorders may be evidenced. That situation may be highly deleterious for their social image, status and desirability, with negative outcomes on their quality of life. Accordingly, both caregivers and families’ burden may be meaningfully heavy (Ashrafi et al., 2020; Behan, Rubbo, Lucas, & Dunn Galvin, 2017; Singh & Santosh, 2018). To prevent withdrawal, passivity, and isolation, different rehabilitative approaches may be adopted (Lioce et al., 2014; Parisi, Di Filippo, & Roccella, 2015). Beside cognitive-behavioral interventions and/or occupational therapy, one may envisage technology-aided solutions (AT) useful for both assessment and rehabilitative purposes (Alves, Carvalho, Aguilar, De Brito, & Bastos, 2020; Lancioni, Singh, O’Reilly, & Alberti, 2019). In fact, rare genetic syndromes may cause significant communicative, intellectual, and motor impairments, with negative outcomes on their quality of life. To overcome that issue, AT-based interventions may be helpful.
For instance, Pham, Bennett, and Zetina (2019) critically reviewed technology and evidence-based practices among children with autism and neurodevelopmental disorders. Speech generating devices (SGD), computer-assisted instructions, augmented and virtual realities, robot-mediated programs, and video-based instructions were discussed. Social and communication skills of the recruited participants were targeted as dependent variables. Implications and future directions of technology-aided strategies were argued to improve social functioning of individuals with severe to profound multiple developmental disabilities in daily settings.
A further illustrative example is provided by Robb, Nothridge, Politis, and Zhang (2018) who addressed the parents’ attitudes of children with rare genetic syndromes and neurodevelopmental disorders to use computerized cognitive training helpful to enhance executive functions. To pursue that goal, a questionnaire was developed, based on the theory of planned behavior (Ajzen, 1991). It was postulated that a person’s intention to engage in a behavior is predicted by (a) the attitude towards the behavior, (b) the subjective and perceived norms of that behavior, and (c) the perceived control over the behavior. The questionnaire was filled by parents of children with rare diseases and neurodevelopmental disorders. Fifty-eight unique responses were retained. Results demonstrated low levels of knowledge and experience along the computerized cognitive training. Nevertheless, positive beliefs about the beneficial potential of such training were recorded.
Rance (2014) reviewed the recent literature exploring the use of wireless hearing technologies high-functioning children with autism and neurodevelopmental disorders. Preliminary findings corroborated the improvements of auditory inputs in children with autism and developmental disabilities with an enhancement of social interactions, academic performance, and educational outcomes in school-aged children with autism and neurodevelopmental impairments.
Key Terms in this Chapter
Quality of Life: Complex psychological construct which includes pleasure, satisfaction, fulfilment, well-being, and happiness.
Assistive Technology: Umbrella term including any piece, device, tool or equipment enabling self-determination and independence in individuals with developmental disorders.
Challenging Behaviors: Behaviors negatively interfering with learning process or representing a potential threat for own or other safety.
Review: Categorization of empirical studies available in the literature along a determined time interval on a specific topic.
Rare Genetic Syndromes: Medical conditions caused by inherited gene mutations. These can be passed down from parents to children and run along families.
Neurodevelopmental Disorders: Impairments of the growth and the development of the brain and/or central nervous system.