Rett Syndrome

Rett syndrome is a thief! It robs little girls of their projected life. It lulls their families into a false sense of security while their little girls develop normally for 6 to 18 months. Then it insidiously robs them of their skills and abilities until they are trapped in a body that won't respond. These little girls are called "silent angels" (Hunter, 2007). Rett syndrome (RS) was originally identified in 1966 by the Austrian neurologist Andreas Rett, but his research and findings were written in an obscure form of the German language the medical world could not and did not translate. It wasn't until 1983, that Rett syndrome was re-identified and labeled as its own disorder (Hunter, 2007). The Rett Syndrome Research Foundation (2006) summarizes the condition best with: Rett syndrome is a debilitating neurological disorder diagnosed almost exclusively in females. Children with Rett syndrome appear to develop normally until 6 to 18 months of age when they enter a period of regression, losing speech and motor skills. Most develop repetitive hand movements, irregular breathing patterns, seizures and extreme motor control problems. Rett syndrome leaves its victims profoundly disabled, requiring maximum assistance with every aspect of daily living. There is no cure. (Retrieved October 14, 2008 from http://www.rsrf.org/about_rett_syndrome/) Research is ever going to regards to Rett syndrome. What is known as of now is that Rett syndrome is caused by a mutation of the gene MECP2. It is not passed down in families and it knows no ethnic boundaries. The majority of Rett girls live to adulthood (RSRF, 2006). The male child doesn't usually survive birth with Rett syndrome

Emotional self-regulation of individuals with autism spectrum disorders: smartwatches for monitoring and interaction

In this paper, we analyze the needs of individuals with Autism Spectrum Disorders (ASD) to have a pervasive, feasible and non-stigmatizing form of assistance in their emotional self-regulation, in order to ease certain behavioral issues that undermine their mental health throughout their life. We argue the potential of recent widespread wearables, and more specifically smartwatches, to achieve this goal. Then, a smartwatch system that implements a wide range of self-regulation strategies and infers outburst patterns from physiological signals and movement is presented, along with an authoring tool for smartphones that is to be used by caregivers or family members to create and edit these strategies, in an adaptive way. We conducted an intensive experiment with two individuals with ASD who showed varied, representative behavioral responses to their emotional dysregulation. Both users were able to employ effective, customized emotional self-regulation strategies by means of the system, recovering from the majority of mild stress episodes and temper tantrums experienced in the nine days of experiment in their classroomThis work has been partially funded by the projects “e-Training y e-Coaching para la integración socio—laboral” (TIN2013-44586-R) and “eMadrid-CM: Investigación y Desarrollo de Tecnologías Educativas en la Comunidad de Madrid” (S2013/ICE-2715). It has been also funded by Fundación Orange during the early stages of the project “Tic-Tac-TEA: Sistema de asistencia para la autorregulación emocional en momentos de crisis para personas con TEA mediante smartwatches

Anxiety and autism:towards personalized digital health

For many people living with conditions such as autism, anxiety manifests so powerfully it has a big impact on quality of life. By investigating the suitability of truly customizable wearable health devices we build on prior research that found each experience of anxiety in people with autism is unique, so 'one-suits all' solutions are not suitable. In addition, users desire agency and control in all aspects of the system. The participative approach we take is to iteratively co-develop prototypes with end users. Here we describe a case study of the co-development of one prototype, a digital stretch wristband that records interaction for later reflection called Snap. Snap has been designed to sit within a platform that allows the distributed and sustainable design, manufacture and data analysis of customizable digital health technologies. We contribute to HCI with (1) lessons learned from a DIY co-development process that follows the principles of modularity, participation and iteration and (2) the potential impact of technology in self-management of anxiety and the broader design implications of addressing unique anxiety experiences

Pilot Study: Assistive Technology as a Vocational Support for Individuals with Autism Spectrum Disorder

The purpose of this pilot study was to determine the effectiveness of video-based instruction (VBI) to support completion of vocational tasks. A mixed-method approach was utilized to explore the use of VBI on a personal digital assistant with individuals with autism spectrum disorder (ASD). Using two assembling cooking tasks, researchers investigated the level of independence with task completion through written instruction versus VBI. The results indicated a small non-significant increase in the level of independence with task completion during the VBI task independent of intelligence quotient (IQ) levels. Participant’s feedback of VBI was also noted as positive to help learn other tasks. This study presents evidence for the use of assistive technology to support task completion in the area of vocation for individuals with ASD

Overcoming barriers and increasing independence: service robots for elderly and disabled people

This paper discusses the potential for service robots to overcome barriers and increase independence of elderly and disabled people. It includes a brief overview of the existing uses of service robots by disabled and elderly people and advances in technology which will make new uses possible and provides suggestions for some of these new applications. The paper also considers the design and other conditions to be met for user acceptance. It also discusses the complementarity of assistive service robots and personal assistance and considers the types of applications and users for which service robots are and are not suitable

Functional Technology for Individuals with Intellectual Disabilities: Meta-Analysis of Mobile Device-Based Interventions

This study employs a meta-analysis of single-subject design research to investigate the efficacy of mobile device-based interventions for individuals with intellectual disabilities (ID) and to further examine possible variables that may moderate the intervention outcomes. A total of 23 studies, 78 participants, and 140 observed cases that met the inclusion criteria were included in the meta-analysis. The efficacy of interventions was measured by computing the percentage of nonoverlapping data points (PNDs) and compared across participants’ characteristics, mobile device types, functions of mobile device use, target skills, and intervention strategies. The results showed that interventions with mobile devices for individuals with ID were very effective to acquire, maintain, and generalize the target skills. The magnitude of PNDs was not significantly affected by participants’ characteristics, target skills, intervention strategies or types of mobile device use. Employment of the maintenance and generalization phases and the mastery criterion were significantly associated with PND scores. Mobile devices were mainly utilized as an instructional device for this population. The discussion includes suggestions for expanding the use of mobile devices to the daily activities of individuals with ID as functional technology (FT)

Assistive and Augmentative Communication: Ethics and Possibilities in Music Therapy with Non-Speaking clients

Music therapy is a healthcare field wherein music experiences and the myriad relationships formed between client(s), board-certified music therapist(s), and music activates health-oriented changes (Bruscia, 2014). Within this field there are multiple facets that directly impact the client’s experiences; these include: arrangement of the therapy environment, role and function of music experiences, therapeutic relationships, and communication in verbal and non-verbal forms. However, there is a gap in the education and training of music therapists concerning alternatives to verbal communication, and the use of these alternatives in therapy. Through interviews and analysis, this thesis presents findings regarding the experiences of one non-speaking music therapy participant, and three board certified music therapists with relevant expertise, to empower professional and student music therapists to advance their engagement with non-speaking clients in music therapy

Human-centred design methods : developing scenarios for robot assisted play informed by user panels and field trials

Original article can be found at: http://www.sciencedirect.com/ Copyright ElsevierThis article describes the user-centred development of play scenarios for robot assisted play, as part of the multidisciplinary IROMEC1 project that develops a novel robotic toy for children with special needs. The project investigates how robotic toys can become social mediators, encouraging children with special needs to discover a range of play styles, from solitary to collaborative play (with peers, carers/teachers, parents, etc.). This article explains the developmental process of constructing relevant play scenarios for children with different special needs. Results are presented from consultation with panel of experts (therapists, teachers, parents) who advised on the play needs for the various target user groups and who helped investigate how robotic toys could be used as a play tool to assist in the children’s development. Examples from experimental investigations are provided which have informed the development of scenarios throughout the design process. We conclude by pointing out the potential benefit of this work to a variety of research projects and applications involving human–robot interactions.Peer reviewe